#WeNurses - Tuesday 28th February 2017 8pm (Greenwich Standard Time) Nursing in the 21st century: Demystifying rare disease HEE-G

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Jacob has a rare disease. His parents never found out the reason why he developed this condition and are worried about other people in the family being affected. Would you feel equipped to support Jacob and his family?

Rare diseases are individually rare but collectively common, with 1 in 17 people in the UK affected by a rare disease. Rare diseases include those that are more prevalent, such as cystic fibrosis (which affects over 9,000 people in the UK) to those conditions where only a few people in the world are affected. There are between 6,000 and 8,000 known rare diseases, with around 5 new conditions being described in the medical literature every week.  

It is thought that 80% of all rare disease occurs due to changes in an individual’s DNA. Thanks to advances in technology, many of these changes can now be identified through reading all of a person’s DNA - their genome. Achieving a diagnosis of a rare disease can often be a long and complicated journey. Projects such as the 100,000 Genomes Project are showing the true potential of genomic analysis and the impact it can have on an individual and their families, providing answers where previously there were none.

Watch our short film to find out the impact genomics has made to one patient and his family in achieving their rare disease diagnosis.

How will nurses play their part?

The NHS aims to be a world leader in delivering genomic healthcare. Genomic information can help in making a rare disease diagnosis and support management and treatment decisions. Nurses play a key role throughout this patient journey, and need to be ready with the tools required to communicate genomic information, understand the implications of results, and provide appropriate support.

Rare Disease Day is an annual event on 28th February that is designed to raise awareness across the world about rare diseases and their impact on patients’ lives. Health Education England’s (HEE) Genomics Education Programme (GEP) would like to engage with the nursing community to discuss how nurses can support patients and their families with rare diseases, and what the future may bring for individuals in terms of diagnosis and treatment, in particular:

  • How often do you encounter patients with a rare disease in your practice?
  • What role should nurses play in supporting these patients and their families?
  • Have you sought consent from a patient for a research project on rare disease?
  • How confident would you feel in talking to a patient about how genomics can help in diagnosis and treatment?
  • What helpful advice do you have for talking with patients and their families about rare disease?


What is the Genomics Education Programme?

The GenomicsEducation Programme has been set up to support the education and training of healthcare professionals in genomic medicine. The programme has three main aims:

1)    Support NHS professionals involved in the 100,000 Genomes Project.

2)    Support the wider transformation of services to integrate genomics technologies into healthcare.

3)    Up skill existing staff so they can make the most of genomic technologies in their work.

The programme will meet these aims through the provision of a range of educational and training resources. For more information, visit our website or email us at genomicseducation@hee.nhs.uk 


About our guest hosts

Will Evans General Practitioner and father of a child with a rare disease Dr Will Evans is the father of Sam who is nine and has Niemann Pick type C (NP-C), a rare neurodegenerative lysosomal storage disorder that affects approximately 80 people in the UK. Will is also the chairman of NPUK the patient advocacy and support group for those affected by NP diseases. Will works as a GP in Leeds, and has an interest in education, diagnostics and rare diseases.He is currently studying part time for a MSc in Genomic Medicine. He has published articles, written e-learning modules and taught a range of audiences on rare diseases.

Pooja Dasani Pooja is a Principle Genetic Counsellor working as a genomics education lead at the West Midlands Genomic Medicine Centre. Pooja has had various roles over the last eight years of working for the service including developing education materials and managing a local community genetic counselling project that aimed to transmit genetic risk information across cultural and language barriers. Pooja now works across cancer and general genetics. Pooja is an active member of the Birmingham Women’s hospital operations team for the 100,000 genomes project.

Sue Hatton Sue is a Senior Nursing Policy Manager with Health Education England. Sue trained as a general and children’s nurse and has a wealth of experience working across children’s services. The majority of her strategic work has been within the West Midlands and across London. At Regional Office, Strategic Health Authority, Department of Health and Health Education England, she has held a variety of positions in maternity, child health and nursing across strategy, policy and workforce. She has been fortunate to have been involved or led on a number of national projects around maternity, children’s palliative care, health visiting, general practice nursing and child health.

Michelle Bishop Dr Michelle Bishop is the Education Development Specialist for HEE’s Genomics Education Programme. She has worked in genetics and genomics education for a number of years, previously working at the NHS National Genetics Education and Development Centre and has a PhD in the field of genetics education. Michelle supports the work of the Genomics Education Programme by providing educational and clinical expertise through resource production, leading curricular development for specialist workforce training and driving the wider NHS workforce transformation in genomics.

Ed Miller Dr Ed Miller is a Senior Education Development Officer for HEE’s Genomics Education Programme. Ed provides scientific and educational support to the programme through development and production of a range of resources for the NHS workforce. Before joining the Genomics Education Programme, Ed researched DNA damage repair and replication and has a PhD from the University Birmingham in this area. During his time as a researcher he gained valuable experience in science communication and public engagement developing, organising and presenting events to educate a wide range of audiences.





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 Chat Summary

 

This discussion started by asking how often participants encountered people with rare diseases - the responses were interesting .....




















The discussion then moved on to explore the nurses role:












Participants then explored research and rare diseases:

















Finally participants shared their final thoughts around rare diseases and genomics:






















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 #WeNurses transcript

 
@to_murse
28 February 2017 20:00
RT @NewArrivalBook: Best TV Moment of the week! @BBCDoctors @lauraloo16 #bhartipatel #doctors #nurses #wenurses @wenurses #hulahoop https:/…
@cherylwilson2
28 February 2017 20:00
RT @WeLDnurses: Amazing story for tonights #WeNurses chat on Rare Diseases & genomic healthcare, still time to watch & chat at 8pm https:/…
@Jacquelin_Joyce
28 February 2017 20:00
RT @sue_hatton1: #WeNurses Useful link here Genomics Education Programme (GEP) rare diseases: https://t.co/cUTxho0QJq https://t.co/XmODrCM…
@PoojaDasani1
28 February 2017 20:00
RT @WeNurses: Hello and welcome to tonight's #RareDiseaseDay #WeNurses with @genomicsedu https://t.co/JuUHcQwJVt
@EdGenomesEdu
28 February 2017 20:00
Hello @WeNurses #WeNurses
@WeNurses
28 February 2017 20:00
Tonights #WeNurses is around de-mystifying rare disease
@WeNurses
28 February 2017 20:01
We are joined by the brilliant @genomicsedu team > @EdGenomesEdu @willrhevans @PoojaDasani1 @sue_hatton1 @mbishop_uk @AlisonPope4 #WeNurses
@AlisonPope4
28 February 2017 20:01
RT @WeNurses: Tonights #WeNurses is around de-mystifying rare disease
@EdGenomesEdu
28 February 2017 20:01
RT @WeNurses: Tonights #WeNurses is around de-mystifying rare disease
@cherylwilson2
28 February 2017 20:02
RT @WeNurses: Hello and welcome to tonight's #RareDiseaseDay #WeNurses with @genomicsedu https://t.co/JuUHcQwJVt
@AgencyNurse
28 February 2017 20:02
Hi Teresa here - adult nurse working in elderly care (and social media!) #WeNurses
@cherylwilson2
28 February 2017 20:02
RT @WeNurses: Tonights #WeNurses is around de-mystifying rare disease
@PoojaDasani1
28 February 2017 20:02
Hello all #WeNurses
@sue_hatton1
28 February 2017 20:02
RT @WeNurses: Hello and welcome to tonight's #RareDiseaseDay #WeNurses with @genomicsedu https://t.co/JuUHcQwJVt
@WeNurses
28 February 2017 20:02
Hi Ed - nice to have you with us this evening #Wenurses https://t.co/8pzPhnBHJN
@warnetony
28 February 2017 20:02
RT @WeNurses: Hello and welcome to tonight's #RareDiseaseDay #WeNurses with @genomicsedu https://t.co/JuUHcQwJVt
@ClareNash20
28 February 2017 20:02
What is the definition of rare disease in this case #WeNurses https://twitter.com/wenurses/status/836667497571102720
@Bartontd
28 February 2017 20:02
@Crohnoid @mbishop_uk @WeNurses @rarediseaseuk #wenurses LOL as they say......
@WeNurses
28 February 2017 20:02
Thanks for joining us #WeNurses https://twitter.com/PoojaDasani1/status/836667902560505856
@LearnPEOLC
28 February 2017 20:03
Hello all Sarah here- hospice nurse #WeNurses
@WeNurses
28 February 2017 20:03
FIRST QUESTION How often do you encounter patients with a rare disease in your practice? #WeNurses https://t.co/Z3dfIOx0Cx
@WeNurses
28 February 2017 20:03
Hi Sarah - lovely to see you #WeNurses https://twitter.com/learnhospice/status/836668111994699776
@emajay78
28 February 2017 20:04
Hi all #WeNurses
@WeNurses
28 February 2017 20:04
Thoughts ? #WeNurses https://twitter.com/ClareNash20/status/836667976363425792
@WeCYPnurses
28 February 2017 20:04
RT @WeNurses: FIRST QUESTION How often do you encounter patients with a rare disease in your practice? #WeNurses https://t.co/Z3dfIOx0Cx
@WeDocs
28 February 2017 20:04
RT @WeNurses: FIRST QUESTION How often do you encounter patients with a rare disease in your practice? #WeNurses https://t.co/Z3dfIOx0Cx
@WeSchoolNurses
28 February 2017 20:04
RT @WeNurses: FIRST QUESTION How often do you encounter patients with a rare disease in your practice? #WeNurses https://t.co/Z3dfIOx0Cx
@WeParamedics
28 February 2017 20:04
RT @WeNurses: FIRST QUESTION How often do you encounter patients with a rare disease in your practice? #WeNurses https://t.co/Z3dfIOx0Cx
@carolgair
28 February 2017 20:04
#WeNurses hi. Mainly lurking. Wee bit late. Apologies.
@EdGenomesEdu
28 February 2017 20:04
@ClareNash20 Hi a rare disease is one that affects less than 1:2000 people ##WeNurses
@WeNurses
28 February 2017 20:04
@ChristineWCCCU welcome :D #Wenurses
@cherylwilson2
28 February 2017 20:04
Hello Cheryl here at the moment carehome #Matron #WeNurses
@ClaireW_UK
28 February 2017 20:04
#whywedoresearch @WeNurses #wenurses followers - interesting tweetchat starting with @FNightingaleF over at #FutNur https://twitter.com/FNightingaleF/status/836667344919363585
@cherylwilson2
28 February 2017 20:04
RT @WeNurses: FIRST QUESTION How often do you encounter patients with a rare disease in your practice? #WeNurses https://t.co/Z3dfIOx0Cx
@WeNurses
28 February 2017 20:04
Thanks Ed #WeNurses https://t.co/WAMQKvWifF
@AlisonPope4
28 February 2017 20:05
RT @WeNurses: FIRST QUESTION How often do you encounter patients with a rare disease in your practice? #WeNurses https://t.co/Z3dfIOx0Cx
@WeNurses
28 February 2017 20:05
RT @EdGenomesEdu: @ClareNash20 Hi a rare disease is one that affects less than 1:2000 people ##WeNurses
@tangolikecheeky
28 February 2017 20:05
#WeNurses https://t.co/NAkq0g3zx2
@AgencyNurse
28 February 2017 20:05
not too often ... was trying to think about this today .... #WeNurses https://t.co/NzAb2d0poX
@Bartontd
28 February 2017 20:05
Evening All #wenurses #Davewave from my #Spot #settee on a cold blea blowy night in #Swansea #Father to an Adult Child with a #RareDisease
@LearnPEOLC
28 February 2017 20:05
@WeNurses #WeNurses looking forward to learning lots...
@ClareNash20
28 February 2017 20:05
@WeNurses for every 1 in 2,000 pts maybe ?? #WeNurses
@rattycastle
28 February 2017 20:06
RT @ProfJuneG: .@DannGooding @WeNurses Nurses aren't 'born'. They are made through rigorous education, experience and open minds. #WeNurses
@WeNurses
28 February 2017 20:06
Hi @carolgair thanks for joining #wenurses this eve :) lurking and a wee bit late is super fine by us!
@carolgair
28 February 2017 20:06
@WeNurses currently Derm surgery unit. Honorary Derm Cons/Genetics surgery list. Newcastle Uni involved in genome proj (I think) #wenurses
@ChristineWCCCU
28 February 2017 20:06
@WeNurses #wenurses q1 used to get some rare neuro cases on the stroke unit as there was nowhere else suitable but not much rare diseases
@AgencyNurse
28 February 2017 20:06
Cared for someone once with Guillain - Barre syndrome > http://www.nhs.uk/Conditions/Guillain-Barre-syndrome/Pages/Introduction.aspx #WeNurses
@mbishop_uk
28 February 2017 20:06
Rare is not as rare as you think...http://bit.ly/2muCJGV #WeNurses https://twitter.com/WeNurses/status/836668190067408900
@cazzyorr
28 February 2017 20:06
#WeNurses hi all ED specialist and Education Quality Manager
@WeNurses
28 February 2017 20:07
hello @cherylwilson2 thanks for joining #WeNurses always lovely to see you :)
@WeNurses
28 February 2017 20:07
Welcome Dave #WeNurses https://twitter.com/Bartontd/status/836668689948659713
@captaintau
28 February 2017 20:07
@WeNurses rare patient arrival with "potential" for rare disease. Not yet actual. I work in Minor Injuries #wenurses
@WeNurses
28 February 2017 20:07
RT @ChristineWCCCU: @WeNurses #wenurses q1 used to get some rare neuro cases on the stroke unit as there was nowhere else suitable but not…
@willrhevans
28 February 2017 20:07
@wenurses #WeNurses less than 5 in 10,000. But lots of diseases 7000 so 1 in 17 people have a rare disease at some point in their life
@WeNurses
28 February 2017 20:07
RT @mbishop_uk: Rare is not as rare as you think...http://bit.ly/2muCJGV #WeNurses https://twitter.com/WeNurses/status/836668190067408900
@cherylwilson2
28 February 2017 20:07
@WeNurses oh thankyou it's nice to be here #wenurses
@sue_hatton1
28 February 2017 20:07
#WeNurses need 2 be aware of rare disease & ensure pts receive prompt diagnosis,information support G8t NT article http://bit.ly/2mlBptb
@WeNurses
28 February 2017 20:08
RT @captaintau: @WeNurses rare patient arrival with "potential" for rare disease. Not yet actual. I work in Minor Injuries #wenurses
@WeNurses
28 February 2017 20:08
RT @willrhevans: @wenurses #WeNurses less than 5 in 10,000. But lots of diseases 7000 so 1 in 17 people have a rare disease at some point i…
@LearnPEOLC
28 February 2017 20:08
RT @mbishop_uk: Rare is not as rare as you think...http://bit.ly/2muCJGV #WeNurses https://twitter.com/WeNurses/status/836668190067408900
@cherylwilson2
28 February 2017 20:08
RT @willrhevans: @wenurses #WeNurses less than 5 in 10,000. But lots of diseases 7000 so 1 in 17 people have a rare disease at some point i…
@EdGenomesEdu
28 February 2017 20:08
Great Nursing Times article http://bit.ly/2mlBptb #WeNurses #RareDiseaseDay
@ClaireW_UK
28 February 2017 20:09
Q1 is up... #FutNur #whywedoresearch #wenurses https://t.co/HNaFHV9cOy
@ross_6479_RNLD
28 February 2017 20:09
RT @WeLDnurses: What a chat this evening via #WeNurses "Nursing in the 21st century: Demystifying rare disease" https://t.co/aD3RYKni7L see…
@ross_6479_RNLD
28 February 2017 20:09
RT @WeLDnurses: Amazing story for tonights #WeNurses chat on Rare Diseases & genomic healthcare, still time to watch & chat at 8pm https:/…
@WeNurses
28 February 2017 20:09
a big welcome @cazzyorr to #wenurses this eve :) https://t.co/3pqyuTTPmL
@BridgetJohnst
28 February 2017 20:09
RT @ClaireW_UK: Q1 is up... #FutNur #whywedoresearch #wenurses https://t.co/HNaFHV9cOy
@sue_hatton1
28 February 2017 20:09
RT @sue_hatton1: #WeNurses Useful link here Genomics Education Programme (GEP) rare diseases: https://t.co/cUTxho0QJq https://t.co/XmODrCM…
@UHSResNurses
28 February 2017 20:09
RT @genomicsedu: Join us in 15 Mins @WeNurses where we will be exploring rare diseases #WeNurses #RareDiseaseDay
@LearnPEOLC
28 February 2017 20:09
@mbishop_uk @WeNurses #WeNurses not often see rare disease in adults- saw more when working in paeds
@Bartontd
28 February 2017 20:09
@AgencyNurse #wenurses me too - a GP by chance - happily after a long illness he recovered. Also often see GB in ITU for ventilation
@captaintau
28 February 2017 20:09
@WeNurses I and my colleagues had Ebola preparedness training. At CQC visit 2015 (I think) they were quizzing us on MERS #wenurses
@PoojaDasani1
28 February 2017 20:09
RT @willrhevans: @wenurses #WeNurses less than 5 in 10,000. But lots of diseases 7000 so 1 in 17 people have a rare disease at some point i…
@AgencyNurse
28 February 2017 20:10
@PoojaDasani1 no racking brain to think of more ... am sure I do ! #WeNurses
@cazzyorr
28 February 2017 20:10
#WeNurses Education - we want to get involved @DBH_NHSFT any links to education programmes?
@TRShalley
28 February 2017 20:10
The 4 countries have a rare disease plan #rarediseaseday #wenurses @wenurses
@GeneticAll_UK
28 February 2017 20:10
@EdGenomesEdu @ClareNash20 @rarediseaseuk is a campaign of @GeneticAll_UK to support those with a rare disease #wenurses #RareDiseaseDay
@WeNurses
28 February 2017 20:10
Thanks Sue #EBP #Wenurses https://t.co/FSwujNj1sx
@AgencyNurse
28 February 2017 20:10
RT @EdGenomesEdu: Great Nursing Times article https://t.co/Rm9oYj9eA6 #WeNurses #RareDiseaseDay
@AlisonPope4
28 February 2017 20:10
RT @sue_hatton1: #WeNurses need 2 be aware of rare disease & ensure pts receive prompt diagnosis,information support G8t NT article https:/…
@PoojaDasani1
28 February 2017 20:11
RT @GeneticAll_UK: @EdGenomesEdu @ClareNash20 @rarediseaseuk is a campaign of @GeneticAll_UK to support those with a rare disease #wenurses…
@carolgair
28 February 2017 20:11
Q1. Work done is advancing knowledge/treatment of these... #WeNurses https://t.co/vMi6wgBizV
@AlisonPope4
28 February 2017 20:11
RT @willrhevans: @wenurses #WeNurses less than 5 in 10,000. But lots of diseases 7000 so 1 in 17 people have a rare disease at some point i…
@cherylwilson2
28 February 2017 20:11
@AgencyNurse @PoojaDasani1 same here urrrm #wenurses
@arewa_OO
28 February 2017 20:11
RT @WeNurses: Tonights #WeNurses is around de-mystifying rare disease
@WeNurses
28 February 2017 20:11
NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH7x
@PoojaDasani1
28 February 2017 20:11
RT @AgencyNurse: @PoojaDasani1 no racking brain to think of more ... am sure I do ! #WeNurses
@opaaluk
28 February 2017 20:12
RT @LoviseBerg62: A Core Componant of all Nurses Roles - Patient Advocacy #Wenurses a person who puts a case on someone else's behalf.
@opaaluk
28 February 2017 20:12
RT @WeNurses: #WeNurses on Advocacy Catch up here > https://t.co/BR4M0ozRKX https://t.co/y9ZN4Gw8FF
@nursejah
28 February 2017 20:12
RT @ClaireW_UK: #whywedoresearch @WeNurses #wenurses followers - interesting tweetchat starting with @FNightingaleF over at #FutNur https:/…
@TheObGProject
28 February 2017 20:12
RT @EdGenomesEdu: Great Nursing Times article http://bit.ly/2mlBptb #WeNurses #RareDiseaseDay
@mbishop_uk
28 February 2017 20:13
Always happy to have more people on board with us - find out more @genomicsedu #WeNurses https://twitter.com/cazzyorr/status/836669857328422914
@Caroline_Benj
28 February 2017 20:13
#WeNurses, as a genetic counsellor often to us the rare diseases are 'frequent' in the clinic
@carolgair
28 February 2017 20:13
@WeNurses CNS roles would be ideal. Education, network, support. Would make real difference, #wenurses
@AgencyNurse
28 February 2017 20:13
@cherylwilson2 @PoojaDasani1 just googling rare disease, saw abdominal aortic aneurysm have come across ppl with this a few times #WeNurses
@captaintau
28 February 2017 20:13
@WeNurses practical (isolation / protection,) medical (treating) and also psychological. #wenurses
@AlisonPope4
28 February 2017 20:13
RT @GeneticAll_UK: @EdGenomesEdu @ClareNash20 @rarediseaseuk is a campaign of @GeneticAll_UK to support those with a rare disease #wenurses…
@cherylwilson2
28 February 2017 20:14
@AgencyNurse @PoojaDasani1 how about Huntingtons #wenurses
@GeneticAll_UK
28 February 2017 20:14
RT @Caroline_Benj: #WeNurses, as a genetic counsellor often to us the rare diseases are 'frequent' in the clinic
@AlisonPope4
28 February 2017 20:14
RT @WeNurses: NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH…
@sue_hatton1
28 February 2017 20:14
#WeNurses Useful Read: Rare Disease UK care coordinator report: https://t.co/kAl5Lxu3Lm
@WeNurses
28 February 2017 20:14
RT @sue_hatton1: #WeNurses Useful Read: Rare Disease UK care coordinator report: https://t.co/kAl5Lxu3Lm
@ClareNash20
28 February 2017 20:14
Flag it in acute hospital pt administration system or EPR for prompt recognition and trigger care pathway? #WeNurses https://t.co/MqtRR7D1fY
@AlisonPope4
28 February 2017 20:14
RT @mbishop_uk: Always happy to have more people on board with us - find out more @genomicsedu #WeNurses https://t.co/UknybBC5rc
@WeCommissioners
28 February 2017 20:14
RT @WeNurses: NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH…
@WeDocs
28 February 2017 20:14
RT @WeNurses: NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH…
@WeCommNurses
28 February 2017 20:14
RT @WeNurses: NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH…
@WeCYPnurses
28 February 2017 20:14
RT @WeNurses: NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH…
@WeMidwives
28 February 2017 20:14
RT @WeNurses: NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH…
@WePharmacists
28 February 2017 20:14
RT @WeNurses: NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH…
@WeSchoolNurses
28 February 2017 20:14
RT @WeNurses: NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH…
@WeGPNs
28 February 2017 20:14
RT @WeNurses: NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH…
@EdGenomesEdu
28 February 2017 20:14
A Video from @genomicsedu on primary care's role in rare diseases https://t.co/mK6uSfYVj8 #WeNurses
@cherylwilson2
28 February 2017 20:14
RT @WeNurses: NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH…
@captaintau
28 February 2017 20:14
@WeNurses we probably all know that we need to provide psychological support, but do we know HOW? I don't think I do. #wenurses #compassion
@cherylwilson2
28 February 2017 20:15
RT @sue_hatton1: #WeNurses Useful Read: Rare Disease UK care coordinator report: https://t.co/kAl5Lxu3Lm
@AgencyNurse
28 February 2017 20:15
Lots on this list (from the US) > https://rarediseases.info.nih.gov/diseases/browse-by-first-letter #WeNurses
@EdGenomesEdu
28 February 2017 20:15
RT @AgencyNurse: Lots on this list (from the US) > https://rarediseases.info.nih.gov/diseases/browse-by-first-letter #WeNurses
@mbishop_uk
28 February 2017 20:15
Absolutely @cherylwilson2 @AgencyNurse #WeNurses
@ClareNash20
28 February 2017 20:15
Turners syndrome increased risk for aneurysms @AgencyNurse? #WeNurses
@ChristineWCCCU
28 February 2017 20:15
#WeNurses we could use them as a source, they probably know more about their own disease - expert patients https://twitter.com/WeNurses/status/836670237110075392
@PoojaDasani1
28 February 2017 20:15
@AgencyNurse @cherylwilson2 absolutely, we see them often but dont think of them as raredisease #WeNurses
@sue_hatton1
28 February 2017 20:16
#WeNurses @WeGPNs Check out Primary Care role video: http://bit.ly/2mBNVAT & Nursing Times article: http://bit.ly/2mlBptb
@shiv_smith
28 February 2017 20:16
@Clarsey @CharleneSTMW @PUNC14Julie We'll I'm super mature & still learning on here?? Looking forward to the chat guys #WeNurses #WeMidwives
@AgencyNurse
28 February 2017 20:16
yes its on this list > https://t.co/kpP6nsOt8Q - have nursed people with this too #WeNurses https://t.co/ogfRJOv79f
@willrhevans
28 February 2017 20:16
@wenurses #WeNurses CNS are often the key health care professional for those with rare diseases.
@cazzyorr
28 February 2017 20:16
#WeNurses consider personal care plans for flagging up when patients attend ED? Alerts on booking in
@sue_hatton1
28 February 2017 20:16
RT @AgencyNurse: Lots on this list (from the US) > https://t.co/kpP6nsOt8Q #WeNurses
@AgencyNurse
28 February 2017 20:16
@cherylwilson2 @PoojaDasani1 definitely more common than i first thought #WeNurses
@WeGPNs
28 February 2017 20:16
Great share, thank you @EdGenomesEdu #wenurses https://t.co/szSwxdq2Ep
@LearnPEOLC
28 February 2017 20:16
RT @AgencyNurse: Lots on this list (from the US) > https://t.co/kpP6nsOt8Q #WeNurses
@AgencyNurse
28 February 2017 20:16
RT @ClareNash20: Turners syndrome increased risk for aneurysms @AgencyNurse? #WeNurses
@WeDocs
28 February 2017 20:16
RT @WeGPNs: Great share, thank you @EdGenomesEdu #wenurses https://t.co/szSwxdq2Ep
@Bartontd
28 February 2017 20:16
@WeNurses Personal experience of rare disease - dramatic long term effect on all the family - Nurses have #wenurses many responsibilities
@captaintau
28 February 2017 20:16
@WeNurses my mistake. "Rare disease" I automatically thought about infection. No idea why. You're looking much more broadly #wenurses
@AgencyNurse
28 February 2017 20:16
RT @PoojaDasani1: @AgencyNurse @cherylwilson2 absolutely, we see them often but dont think of them as raredisease #WeNurses
@WeNurses
28 February 2017 20:16
RT @PoojaDasani1: @AgencyNurse @cherylwilson2 absolutely, we see them often but dont think of them as raredisease #WeNurses
@PoojaDasani1
28 February 2017 20:16
@cherylwilson2 @AgencyNurse indeed! #WeNurses
@PoojaDasani1
28 February 2017 20:17
RT @AgencyNurse: @cherylwilson2 @PoojaDasani1 definitely more common than i first thought #WeNurses
@AlisonPope4
28 February 2017 20:17
RT @EdGenomesEdu: A Video from @genomicsedu on primary care's role in rare diseases https://t.co/mK6uSfYVj8 #WeNurses
@WeNurses
28 February 2017 20:17
RT @Bartontd: @WeNurses Personal experience of rare disease - dramatic long term effect on all the family - Nurses have #wenurses many resp…
@AlisonPope4
28 February 2017 20:17
RT @sue_hatton1: #WeNurses Useful Read: Rare Disease UK care coordinator report: http://bit.ly/2lWzASm
@cherylwilson2
28 February 2017 20:17
Part of wider MDT input clinical support in managing condition and symptoms #wenurses
@mbishop_uk
28 February 2017 20:17
Great point - any suggestions or anything we can provide from @genomicsedu...#WeNurses https://twitter.com/captaintau/status/836671013425274880
@AgencyNurse
28 February 2017 20:17
RT @cazzyorr: #WeNurses consider personal care plans for flagging up when patients attend ED? Alerts on booking in
@WeNurses
28 February 2017 20:17
RT @cazzyorr: #WeNurses consider personal care plans for flagging up when patients attend ED? Alerts on booking in
@EdGenomesEdu
28 February 2017 20:17
@willrhevans @WeNurses Great point Will! #WeNurses
@WeNurses
28 February 2017 20:17
RT @willrhevans: @wenurses #WeNurses CNS are often the key health care professional for those with rare diseases.
@PoojaDasani1
28 February 2017 20:17
RT @Bartontd: @WeNurses Personal experience of rare disease - dramatic long term effect on all the family - Nurses have #wenurses many resp…
@LearnPEOLC
28 February 2017 20:17
#WeNurses #devilsadvocate do we sometimes medicalise compassion too much and forget about just being human? https://twitter.com/captaintau/status/836671013425274880
@WeNurses
28 February 2017 20:17
Another great link #WeNurses #EBP https://twitter.com/sue_hatton1/status/836671313238458368
@WeNurses
28 February 2017 20:17
thanks for joining @rarediseaseuk happy sharing and learning this eve #wenurses
@LearnPEOLC
28 February 2017 20:18
RT @sue_hatton1: #WeNurses @WeGPNs Check out Primary Care role video: http://bit.ly/2mBNVAT & Nursing Times article: https://t.co/ddwzga4…
@laxeygirl
28 February 2017 20:18
RT @WeNurses: NEXT QUESTION What role should nurses play in supporting these patients and their families? #WeNurses https://t.co/35Y9W3DH…
@cherylwilson2
28 February 2017 20:18
RT @WeNurses: Another great link #WeNurses #EBP https://twitter.com/sue_hatton1/status/836671313238458368
@rarediseaseuk
28 February 2017 20:18
.@WeNurses our report found that nurses play a vital role in coordinating care: https://www.raredisease.org.uk/media/1639/rduk-care-coordinator-report.pdf #WeNurses #raredisease
@captaintau
28 February 2017 20:18
@WeNurses I take histories. Often get told of disease I've never heard of. I'm honest. Ask patient about it. #wenurses #expertpatient
@Bartontd
28 February 2017 20:18
RT @sue_hatton1: #WeNurses @WeGPNs Check out Primary Care role video: http://bit.ly/2mBNVAT & Nursing Times article: https://t.co/ddwzga4…
@AgencyNurse
28 February 2017 20:18
Think support and signposting is valuable - knowing whats out there , listening, supporting #WeNurses https://twitter.com/WeNurses/status/836670237110075392
@EdGenomesEdu
28 February 2017 20:18
RT @rarediseaseuk: .@WeNurses our report found that nurses play a vital role in coordinating care: https://www.raredisease.org.uk/media/1639/rduk-care-coordinator-report.pdf #WeNurses #rared…
@WeNurses
28 February 2017 20:18
RT @rarediseaseuk: .@WeNurses our report found that nurses play a vital role in coordinating care: https://www.raredisease.org.uk/media/1639/rduk-care-coordinator-report.pdf #WeNurses #rared…
@Laurabe91575084
28 February 2017 20:18
RT @ChristineWCCCU: #WeNurses we could use them as a source, they probably know more about their own disease - expert patients https://t.co…
@Ataxia_and_Me
28 February 2017 20:18
RT @Bartontd: @WeNurses Personal experience of rare disease - dramatic long term effect on all the family - Nurses have #wenurses many resp…
@PoojaDasani1
28 February 2017 20:18
@Bartontd @WeNurses learning from patient experience is key to long term development of our roles #WeNurses
@cherylwilson2
28 February 2017 20:19
RT @rarediseaseuk: .@WeNurses our report found that nurses play a vital role in coordinating care: https://www.raredisease.org.uk/media/1639/rduk-care-coordinator-report.pdf #WeNurses #rared…
@AlisonPope4
28 February 2017 20:19
RT @willrhevans: @wenurses #WeNurses CNS are often the key health care professional for those with rare diseases.
@WeNurses
28 February 2017 20:19
RT @PoojaDasani1: @Bartontd @WeNurses learning from patient experience is key to long term development of our roles #WeNurses
@PoojaDasani1
28 February 2017 20:19
RT @rarediseaseuk: .@WeNurses our report found that nurses play a vital role in coordinating care: https://www.raredisease.org.uk/media/1639/rduk-care-coordinator-report.pdf #WeNurses #rared…
@captaintau
28 February 2017 20:19
@wenurses It can be important that I know about the disease (e.g. for prescribing) so where practical I look it up at the time #wenurses
@WeNurses
28 February 2017 20:19
Thank you for sharing #WeNurses #EBP https://t.co/IyWLRryWKq
@LearnPEOLC
28 February 2017 20:19
That's a great link #WeNurses https://t.co/brzk2zizxE
@EdGenomesEdu
28 February 2017 20:19
@WeNurses @willrhevans any thoughts on how @genomicsedu can support CNS #WeNurses
@mbishop_uk
28 February 2017 20:19
Interesting point...interested to hear other's thoughts #WeNurses https://t.co/yV4FtBkRE8
@willrhevans
28 February 2017 20:19
@learnhospice #WeNurses Just doing the simple things well. listening, taking the time and making things a little easier.
@AgencyNurse
28 February 2017 20:20
@captaintau @WeNurses yes i do the same - the go off to read more and ask and share with colleagues #WeNurses
@PaulaJMcIntosh
28 February 2017 20:20
#WeNurses Nurses - real nurses are born - end of.
@Bartontd
28 February 2017 20:20
@AgencyNurse @cherylwilson2 @PoojaDasani1 Again a relatively common emergency presentation to ITU #wenurses
@cherylwilson2
28 February 2017 20:20
@AgencyNurse part of wider MDT collaboration plus clinical support or palliative care as time goes on possibly #wenurses
@captaintau
28 February 2017 20:20
@WeNurses my experience is that patients are grateful for honesty (not knowing) and finding out (diligence) #WeNurses
@WeNurses
28 February 2017 20:20
What do people think ? #WeNurses https://twitter.com/EdGenomesEdu/status/836672234479628288
@AlresfordBear
28 February 2017 20:20
Is this irony? #wenurses https://twitter.com/learnhospice/status/836671744077402113
@AgencyNurse
28 February 2017 20:20
RT @mbishop_uk: Interesting point...interested to hear other's thoughts #WeNurses https://twitter.com/learnhospice/status/836671744077402113
@WeNurses
28 February 2017 20:20
RT @mbishop_uk: Interesting point...interested to hear other's thoughts #WeNurses https://twitter.com/learnhospice/status/836671744077402113
@cazzyorr
28 February 2017 20:20
#WeNurses children with rare diseases in ED -parents are the best source of advice - #listen
@AlisonPope4
28 February 2017 20:21
RT @rarediseaseuk: .@WeNurses our report found that nurses play a vital role in coordinating care: https://t.co/S0836PKKK7 #WeNurses #rared…
@WeNurses
28 February 2017 20:21
A good point #WeNurses https://t.co/igII2WWPZi
@susanlogan63
28 February 2017 20:21
@AgencyNurse #wenurses. Thanks for resource. Sister has Wegener granulomatosis. This will be useful ??
@mbishop_uk
28 February 2017 20:21
Great advice @willrhevans #WeNurses https://twitter.com/willrhevans/status/836672314888634372
@Bartontd
28 February 2017 20:21
RT @learnhospice: That's a great link #WeNurses https://twitter.com/rarediseaseuk/status/836671934423158784
@ClareNash20
28 February 2017 20:21
Quick look at this - great as it's not just about medical treatment but holistic approach #WeNurses #RareDiseaseDay… https://twitter.com/i/web/status/836672675233873920
@Ataxia_and_Me
28 February 2017 20:21
RT @rarediseaseuk: .@WeNurses our report found that nurses play a vital role in coordinating care: https://www.raredisease.org.uk/media/1639/rduk-care-coordinator-report.pdf #WeNurses #rared…
@sue_hatton1
28 February 2017 20:21
#WeNurses The power of 100,000 Genomes Project -2 min clip http://bit.ly/2fDd0b0 Lets continue to have discussion… https://twitter.com/i/web/status/836672720146399237
@EdGenomesEdu
28 February 2017 20:21
What role do you think Nurses will play in the future #WeNurses
@AlisonPope4
28 February 2017 20:21
RT @EdGenomesEdu: @WeNurses @willrhevans any thoughts on how @genomicsedu can support CNS #WeNurses
@EdGenomesEdu
28 February 2017 20:21
RT @sue_hatton1: #WeNurses The power of 100,000 Genomes Project -2 min clip https://t.co/Kt7FOuiEpO Lets continue to have discussion & spre…
@AgencyNurse
28 February 2017 20:21
@Bartontd @cherylwilson2 @PoojaDasani1 so commonly rare ! #WeNurses
@Bartontd
28 February 2017 20:21
RT @captaintau: @WeNurses my experience is that patients are grateful for honesty (not knowing) and finding out (diligence) #WeNurses
@AgencyNurse
28 February 2017 20:22
RT @cherylwilson2: @AgencyNurse part of wider MDT collaboration plus clinical support or palliative care as time goes on possibly #wenurses
@AlisonPope4
28 February 2017 20:22
RT @mbishop_uk: Interesting point...interested to hear other's thoughts #WeNurses https://twitter.com/learnhospice/status/836671744077402113
@TRShalley
28 February 2017 20:22
Have family experience of #rarediseaseday we as nurses are not the experts our patients are we have to listen #wenurses @wenurses
@EdGenomesEdu
28 February 2017 20:22
RT @TRShalley: Have family experience of #rarediseaseday we as nurses are not the experts our patients are we have to listen #wenurses @wen…
@ClareNash20
28 February 2017 20:22
RT @sue_hatton1: #WeNurses The power of 100,000 Genomes Project -2 min clip https://t.co/Kt7FOuiEpO Lets continue to have discussion & spre…
@AlisonPope4
28 February 2017 20:22
RT @WeNurses: A good point #WeNurses https://t.co/igII2WWPZi
@cherylwilson2
28 February 2017 20:22
RT @ClareNash20: Quick look at this - great as it's not just about medical treatment but holistic approach #WeNurses #RareDiseaseDay #addis…
@PoojaDasani1
28 February 2017 20:22
Completely agree with a holistic approach #WeNurses https://t.co/kXHNnS7biH
@ClareNash20
28 February 2017 20:22
RT @cazzyorr: #WeNurses children with rare diseases in ED -parents are the best source of advice - #listen
@captaintau
28 February 2017 20:23
@cazzyorr @WeNurses or is the child the best source of advice? #expertpatient #wenurses
@AgencyNurse
28 February 2017 20:23
@cherylwilson2 nursed a lady at end of life with Guillian Barre syndrome - lots of support & specialist care needed #WeNurses
@AlisonPope4
28 February 2017 20:23
RT @sue_hatton1: #WeNurses The power of 100,000 Genomes Project -2 min clip https://t.co/Kt7FOuiEpO Lets continue to have discussion & spre…
@IPDCarrie
28 February 2017 20:23
RT @learnhospice: .@WeEOLC wondering what to do this time next week? Join @nursingbard https://t.co/YstUNABPWX #WeNurses #WeEOLC @theRCN @N…
@EdGenomesEdu
28 February 2017 20:23
@TRShalley @WeNurses can you tell us more? #WeNurses
@willrhevans
28 February 2017 20:23
@captaintau @wenurses #wenurses. gene reviews https://t.co/4eYj8VLFbF and orphanet https://t.co/RL9LZjGAi9 both good
@PoojaDasani1
28 February 2017 20:23
RT @TRShalley: Have family experience of #rarediseaseday we as nurses are not the experts our patients are we have to listen #wenurses @wen…
@mbishop_uk
28 February 2017 20:23
Well said @TRShalley @WeNurses #WeNurses
@ClareNash20
28 February 2017 20:23
@captaintau @WeNurses and google ?? #WeNurses
@cazzyorr
28 February 2017 20:23
#WeNurses NMC conference today - future for nursing - we will be the Drs in 2030 #notimetocare
@AlisonPope4
28 February 2017 20:23
RT @captaintau: @WeNurses my experience is that patients are grateful for honesty (not knowing) and finding out (diligence) #WeNurses
@WeNurses
28 February 2017 20:23
RT @PoojaDasani1: Completely agree with a holistic approach #WeNurses https://t.co/kXHNnS7biH
@Laurabe91575084
28 February 2017 20:23
#wenurses it's essential patients (rare diseases) have a careplan which is flagged when they arrive in A&E. hospital passports also crucial
@WeNurses
28 February 2017 20:24
Really good question ..... what do people think ? #WeNurses https://t.co/hTj7U2EE6a
@IPDCarrie
28 February 2017 20:24
RT @sue_hatton1: #WeNurses The power of 100,000 Genomes Project -2 min clip https://t.co/Kt7FOuiEpO Lets continue to have discussion & spre…
@AgencyNurse
28 February 2017 20:24
RT @sue_hatton1: #WeNurses The power of 100,000 Genomes Project -2 min clip https://t.co/Kt7FOuiEpO Lets continue to have discussion & spre…
@WeNurses
28 February 2017 20:24
RT @sue_hatton1: #WeNurses The power of 100,000 Genomes Project -2 min clip https://t.co/Kt7FOuiEpO Lets continue to have discussion & spre…
@IPDCarrie
28 February 2017 20:24
RT @ClaireW_UK: Tomorrow evening at 8pm GMT - #FutNur tweetchat by team @FNightingaleF #whywedoresearch #wenurses @RoaringNurse @smithhaz…
@cherylwilson2
28 February 2017 20:24
@AgencyNurse complex needs and skilled compassionate nurses key #wenurses
@WeSchoolNurses
28 February 2017 20:24
RT @WeNurses: Really good question ..... what do people think ? #WeNurses https://t.co/hTj7U2EE6a
@WeMHNurses
28 February 2017 20:24
RT @WeNurses: Really good question ..... what do people think ? #WeNurses https://t.co/hTj7U2EE6a
@AgencyNurse
28 February 2017 20:24
RT @TRShalley: Have family experience of #rarediseaseday we as nurses are not the experts our patients are we have to listen #wenurses @wen…
@IPDCarrie
28 February 2017 20:24
RT @mbishop_uk: Interesting point...interested to hear other's thoughts #WeNurses https://t.co/yV4FtBkRE8
@AlisonPope4
28 February 2017 20:24
RT @cherylwilson2: @AgencyNurse part of wider MDT collaboration plus clinical support or palliative care as time goes on possibly #wenurses
@IPDCarrie
28 February 2017 20:24
RT @learnhospice: That's a great link #WeNurses https://t.co/brzk2zizxE
@cherylwilson2
28 February 2017 20:24
RT @WeNurses: Really good question ..... what do people think ? #WeNurses https://t.co/hTj7U2EE6a
@IPDCarrie
28 February 2017 20:24
RT @PoojaDasani1: @Bartontd @WeNurses learning from patient experience is key to long term development of our roles #WeNurses
@WeNurses
28 February 2017 20:25
RT @Laurabe91575084: #wenurses it's essential patients (rare diseases) have a careplan which is flagged when they arrive in A&E. hospital p…
@AlisonPope4
28 February 2017 20:25
RT @TRShalley: Have family experience of #rarediseaseday we as nurses are not the experts our patients are we have to listen #wenurses @wen…
@mbishop_uk
28 February 2017 20:25
RT @Laurabe91575084: #wenurses it's essential patients (rare diseases) have a careplan which is flagged when they arrive in A&E. hospital p…
@Justdreamingof
28 February 2017 20:25
@WeNurses bit late but I see someone every week or so with a rare disease/syndrome eg CRPS, neuropathies, Conversion disorder #WeNurses
@IPDCarrie
28 February 2017 20:25
RT @willrhevans: @wenurses #WeNurses less than 5 in 10,000. But lots of diseases 7000 so 1 in 17 people have a rare disease at some point i…
@IPDCarrie
28 February 2017 20:25
RT @ClaireW_UK: #whywedoresearch #wenurses followers will certainly be interested in #HARTSofthepossible https://twitter.com/DerekCStewart/status/832530180296024066
@LearnPEOLC
28 February 2017 20:25
RT @willrhevans: @learnhospice #WeNurses Just doing the simple things well. listening, taking the time and making things a little easier.
@IPDCarrie
28 February 2017 20:25
RT @ClaireW_UK: So exciting to be working on this - amazing project & amazing people #HARTSofthepossible #whywedoresearch #wenurses https:/…
@IPDCarrie
28 February 2017 20:25
RT @julichap: @NursingBolton students. You interested. There'll be some great advice. #WeNurses https://twitter.com/wenurses/status/832338827368943618
@WeNurses
28 February 2017 20:25
NEXT QUESTION Have you sought consent from a patient for a research project on rare disease? #WeNurses https://t.co/XlhWyw4y3x
@IPDCarrie
28 February 2017 20:25
RT @SarahChapman30: Evidence & practice for neonatal nurses in this Evidently Cochrane blog @WeCYPnurses #WeNurses https://twitter.com/CochraneUK/status/832591436088487936
@AlisonPope4
28 February 2017 20:25
RT @WeNurses: Really good question ..... what do people think ? #WeNurses https://t.co/hTj7U2EE6a
@EdGenomesEdu
28 February 2017 20:25
RT @WeNurses: NEXT QUESTION Have you sought consent from a patient for a research project on rare disease? #WeNurses https://t.co/XlhWyw4…
@LearnPEOLC
28 February 2017 20:26
RT @captaintau: @WeNurses my experience is that patients are grateful for honesty (not knowing) and finding out (diligence) #WeNurses
@IPDCarrie
28 February 2017 20:26
RT @zorgenzo: Advanced Care Planning New Zealand #weNurses #wijVerpleegkundigen https://t.co/PUfWwvZ1Ly
@cherylwilson2
28 February 2017 20:26
RT @WeNurses: NEXT QUESTION Have you sought consent from a patient for a research project on rare disease? #WeNurses https://t.co/XlhWyw4…
@AlisonPope4
28 February 2017 20:26
RT @Laurabe91575084: #wenurses it's essential patients (rare diseases) have a careplan which is flagged when they arrive in A&E. hospital p…
@Bartontd
28 February 2017 20:26
@Pollie1902 Real Nurses are Well Educated, Knowledgeable, Empathetic, Compassionate, Evidenced Updated, Inuitive - But Never Born #wenurses
@AlisonPope4
28 February 2017 20:26
RT @WeNurses: NEXT QUESTION Have you sought consent from a patient for a research project on rare disease? #WeNurses https://t.co/XlhWyw4…
@sue_hatton1
28 February 2017 20:26
#wenurses have found this link really useful too. The @genomicsedu Change day full webinar: http://bit.ly/2fyz6PM
@LearnPEOLC
28 February 2017 20:27
@AlresfordBear nope! #WeNurses some of the communication lit highlights that sometimes the focus becomes too theoretical
@PoojaDasani1
28 February 2017 20:27
RT @WeNurses: Really good question ..... what do people think ? #WeNurses https://t.co/hTj7U2EE6a
@LearnPEOLC
28 February 2017 20:27
RT @mbishop_uk: Great advice @willrhevans #WeNurses https://twitter.com/willrhevans/status/836672314888634372
@RF_Jenkins
28 February 2017 20:27
RT @rarediseaseuk: .@WeNurses our report found that nurses play a vital role in coordinating care: https://www.raredisease.org.uk/media/1639/rduk-care-coordinator-report.pdf #WeNurses #rared…
@Justdreamingof
28 February 2017 20:27
@WeNurses I also have one! Genetic condition for which part of study in Belgium (they just want blood tho so no holidays as yet!) #WeNurses
@Bartontd
28 February 2017 20:27
RT @PoojaDasani1: @Bartontd @WeNurses learning from patient experience is key to long term development of our roles #WeNurses
@WeNurses
28 February 2017 20:27
Another great link - thanks Sue #WeNurses #EBP https://twitter.com/sue_hatton1/status/836674030912548864
@AgencyNurse
28 February 2017 20:28
@Justdreamingof @WeNurses so do you send your blood in the post ? #Wenurses
@cherylwilson2
28 February 2017 20:28
RT @WeNurses: Another great link - thanks Sue #WeNurses #EBP https://twitter.com/sue_hatton1/status/836674030912548864
@EdGenomesEdu
28 February 2017 20:28
What is understood by the term consent? @WeNurses #WeNurses
@sue_hatton1
28 February 2017 20:28
#wenurses ?? at NHS Consent to treatment: http://bit.ly/1OXpw4Q GEP Consent and ethics course: http://bit.ly/1XFqEi2
@ClareNash20
28 February 2017 20:28
#WeNurses https://twitter.com/clarenash20/status/836674411424014337
@AgencyNurse
28 February 2017 20:28
RT @EdGenomesEdu: What is understood by the term consent? @WeNurses #WeNurses
@WeNurses
28 February 2017 20:28
RT @EdGenomesEdu: What is understood by the term consent? @WeNurses #WeNurses
@AgencyNurse
28 February 2017 20:28
RT @sue_hatton1: #wenurses ?? at NHS Consent to treatment: http://bit.ly/1OXpw4Q GEP Consent and ethics course: http://bit.ly/1XFqEi2
@WeNurses
28 February 2017 20:28
RT @sue_hatton1: #wenurses ?? at NHS Consent to treatment: http://bit.ly/1OXpw4Q GEP Consent and ethics course: http://bit.ly/1XFqEi2
@sue_hatton1
28 February 2017 20:29
#wenurses Another Gr8 link to help Genomics England Consent: http://bit.ly/2mlyHnr
@Laurabe91575084
28 February 2017 20:29
RT @WeNurses: Another great link - thanks Sue #WeNurses #EBP https://twitter.com/sue_hatton1/status/836674030912548864
@ChrisMulryan
28 February 2017 20:29
@PoojaDasani1 @WeNurses completely agree! You will never diagnose a disease you ain't herd off! Education is key #Wenurses
@PoojaDasani1
28 February 2017 20:29
RT @EdGenomesEdu: What is understood by the term consent? @WeNurses #WeNurses
@AlisonPope4
28 February 2017 20:29
RT @AgencyNurse: No never - but can see this is a role for nurses This is why connections and sharing knowledge is so important #WeNurses…
@shiv_smith
28 February 2017 20:30
RT @willrhevans: @wenurses #WeNurses CNS are often the key health care professional for those with rare diseases.
@AlisonPope4
28 February 2017 20:30
RT @EdGenomesEdu: What is understood by the term consent? @WeNurses #WeNurses
@WeNurses
28 February 2017 20:30
Fab thanks Sue #WeNurses #EBP https://twitter.com/sue_hatton1/status/836674635685056513
@carolgair
28 February 2017 20:30
@WeNurses not personally. Lots of governance around it. Rightly so. Inspired that ppl help advance treatment for others not self #wenurses
@Justdreamingof
28 February 2017 20:30
@WeNurses Be the patients advocate, I was referred to as "original mutant" as teen &rest of the mdt sat in silence- humiliating! #WeNurses
@shiv_smith
28 February 2017 20:30
RT @cherylwilson2: Part of wider MDT input clinical support in managing condition and symptoms #wenurses
@AlisonPope4
28 February 2017 20:30
RT @sue_hatton1: #wenurses ?? at NHS Consent to treatment: http://bit.ly/1OXpw4Q GEP Consent and ethics course: http://bit.ly/1XFqEi2
@AlisonPope4
28 February 2017 20:30
RT @sue_hatton1: #wenurses Another Gr8 link to help Genomics England Consent: http://bit.ly/2mlyHnr
@WeNurses
28 February 2017 20:30
A very good point #WeNurses https://twitter.com/ChrisMulryan/status/836674721047531520
@shiv_smith
28 February 2017 20:30
RT @captaintau: @WeNurses I take histories. Often get told of disease I've never heard of. I'm honest. Ask patient about it. #wenurses #exp…
@WeNurses
28 February 2017 20:31
Well said #WeNurses https://twitter.com/carolgair/status/836674935552638978
@ClareNash20
28 February 2017 20:31
RT @sue_hatton1: #wenurses Another Gr8 link to help Genomics England Consent: http://bit.ly/2mlyHnr
@AlisonPope4
28 February 2017 20:31
RT @WeNurses: A very good point #WeNurses https://twitter.com/ChrisMulryan/status/836674721047531520
@shiv_smith
28 February 2017 20:31
RT @EdGenomesEdu: @WeNurses @willrhevans any thoughts on how @genomicsedu can support CNS #WeNurses
@WeNurses
28 February 2017 20:31
Oh thats awful ! We are sorry to hear this #WeNurses https://twitter.com/Justdreamingof/status/836674937133883397
@shiv_smith
28 February 2017 20:31
RT @cherylwilson2: @AgencyNurse part of wider MDT collaboration plus clinical support or palliative care as time goes on possibly #wenurses
@PoojaDasani1
28 February 2017 20:32
#WeNurses we as genetic counsellors do a great deal of work in supporting nurses consenting for rare genetic disorders, keen to continue
@AlresfordBear
28 February 2017 20:32
@learnhospice Like circles #wenurses
@EdGenomesEdu
28 February 2017 20:32
RT @PoojaDasani1: #WeNurses we as genetic counsellors do a great deal of work in supporting nurses consenting for rare genetic disorders, k…
@AgencyNurse
28 February 2017 20:32
RT @PoojaDasani1: #WeNurses we as genetic counsellors do a great deal of work in supporting nurses consenting for rare genetic disorders, k…
@WeNurses
28 February 2017 20:32
RT @PoojaDasani1: #WeNurses we as genetic counsellors do a great deal of work in supporting nurses consenting for rare genetic disorders, k…
@Justdreamingof
28 February 2017 20:32
@AgencyNurse @WeNurses yup! My geneticist writes asking for sample, if agree she sends envelope &forms & I post it back! #WeNurses
@AgencyNurse
28 February 2017 20:32
Thank you #WeNurses #EBP https://t.co/MA1RiwYbmQ
@rarediseaseuk
28 February 2017 20:32
Did you know @NIHR est. a ‘Musketeers’ Memorandum’ to help speed up the approval process for #raredisease research? #WeNurses
@sue_hatton1
28 February 2017 20:32
#wenurses there's so much help out there,we are all on a learning curve - let's learn togeather GEP resources page: https://t.co/cUy6ztq95g
@GeneticAll_UK
28 February 2017 20:32
.@WeNurses our report found that patients value #wenurses to support the delivery of findings from genome seq https://t.co/W4tEpJiG6k
@ChrisMulryan
28 February 2017 20:33
@captaintau @WeNurses completely agree most parents know they can educate us about there child's specific condition! #wenurses #partnership
@adave_NHS
28 February 2017 20:33
RT @PoojaDasani1: #WeNurses we as genetic counsellors do a great deal of work in supporting nurses consenting for rare genetic disorders, k…
@AgencyNurse
28 February 2017 20:33
@Justdreamingof @WeNurses one day we will be able to email blood :D #WeNurses
@AlisonPope4
28 February 2017 20:33
RT @PoojaDasani1: #WeNurses we as genetic counsellors do a great deal of work in supporting nurses consenting for rare genetic disorders, k…
@PoojaDasani1
28 February 2017 20:33
RT @GeneticAll_UK: .@WeNurses our report found that patients value #wenurses to support the delivery of findings from genome seq https://t.…
@AgencyNurse
28 February 2017 20:33
RT @sue_hatton1: #wenurses there's so much help out there,we are all on a learning curve - let's learn togeather GEP resources page: https:…
@WeNurses
28 February 2017 20:33
RT @sue_hatton1: #wenurses there's so much help out there,we are all on a learning curve - let's learn togeather GEP resources page: https:…
@mbishop_uk
28 February 2017 20:33
I really hope that views have moved on now @Justdreamingof @WeNurses #WeNurses
@irisbenson100
28 February 2017 20:33
RT @PoojaDasani1: #WeNurses we as genetic counsellors do a great deal of work in supporting nurses consenting for rare genetic disorders, k…
@WeNurses
28 February 2017 20:33
RT @GeneticAll_UK: .@WeNurses our report found that patients value #wenurses to support the delivery of findings from genome seq https://t.…
@claire_adams_
28 February 2017 20:34
Something that I am about to embark on. #rarediseaseday #research #wenurses https://t.co/DYrgzEtuuV
@WeNurses
28 February 2017 20:34
RT @claire_adams_: Something that I am about to embark on. #rarediseaseday #research #wenurses https://twitter.com/rarediseaseuk/status/836675537582108673
@AlisonPope4
28 February 2017 20:34
RT @sue_hatton1: #wenurses there's so much help out there,we are all on a learning curve - let's learn togeather GEP resources page: https:…
@shiv_smith
28 February 2017 20:34
RT @AgencyNurse: Thank you #WeNurses #EBP https://twitter.com/mbishop_uk/status/836675461862330370
@PoojaDasani1
28 February 2017 20:34
RT @claire_adams_: Something that I am about to embark on. #rarediseaseday #research #wenurses https://t.co/DYrgzEtuuV
@Caroline_Benj
28 February 2017 20:34
https://t.co/Tj5JR8kuqB Evaluation project led by a nurse helps improve genomic consent process #wenurses @sue_hatton1
@AlisonPope4
28 February 2017 20:35
RT @GeneticAll_UK: .@WeNurses our report found that patients value #wenurses to support the delivery of findings from genome seq https://t.…
@ClareNash20
28 February 2017 20:35
@mattreid12 @breathe_happy_ interesting? #WeNurses https://t.co/VenDurJkOk
@cazzyorr
28 February 2017 20:35
#WeNurses @DBH_NHSFT extending research and audit - possible topic?
@mbishop_uk
28 February 2017 20:35
Good luck @claire_adams_ #WeNurses
@WeNurses
28 February 2017 20:35
Brilliant link thank you #WeNurses #EBP https://twitter.com/Caroline_Benj/status/836676060196524033
@LearnPEOLC
28 February 2017 20:35
FYI @krystin2311 #WeNurses https://twitter.com/rarediseaseuk/status/836675537582108673
@sue_hatton1
28 February 2017 20:35
#WeNurses excellent share thank you. https://twitter.com/geneticall_uk/status/836675560109715456
@WeNurses
28 February 2017 20:36
Lots of fab links being shared this evening - don't worry we will collate them in the summary #WeNurses
@EdGenomesEdu
28 February 2017 20:36
@WeNurses communication is the key here. Using the right language is essential #WeNurses
@PoojaDasani1
28 February 2017 20:36
RT @Caroline_Benj: https://t.co/Tj5JR8kuqB Evaluation project led by a nurse helps improve genomic consent process #wenurses @sue_hatton1
@mbishop_uk
28 February 2017 20:36
A big reminder of the power of words #WeNurses #RareDiseaseDay https://t.co/r665RQs4wz
@carolgair
28 February 2017 20:36
@WeNurses that's easy! Not confident. ;)) #wenurses
@PoojaDasani1
28 February 2017 20:36
RT @EdGenomesEdu: @WeNurses communication is the key here. Using the right language is essential #WeNurses
@AgencyNurse
28 February 2017 20:36
Currently not very confident - but getting more so through the info filtering through #WeNurses https://t.co/vuFAi5u1df
@ChrisMulryan
28 February 2017 20:37
My interest is in primary immune deficiencies, following the #SPUR acronym to help you find them #WeNurses
@WeNurses
28 February 2017 20:37
RT @EdGenomesEdu: @WeNurses communication is the key here. Using the right language is essential #WeNurses
@EdGenomesEdu
28 February 2017 20:37
@WeNurses https://t.co/rNYSmf82mX genomics in healthcare #WeNurses
@rarediseaseuk
28 February 2017 20:37
@RareDiseasesTRC currently redeveloping the UKClinicalTrialsGateway so patients can make contact with researchers directly 1/2 #WeNurses
@willrhevans
28 February 2017 20:37
This is not easy. Lots of uncertainty and potential unintended consequences. main thing- takes time. #WeNurses https://t.co/SmTeRwvpFY
@WeNurses
28 February 2017 20:38
@carolgair what would help you to become more confident Carol ? #Wenurses
@punc14Nathan
28 February 2017 20:38
Lurking on #nurchat and #wenurses whilst trying to tweet from the correct account
@WeNurses
28 February 2017 20:38
Thanks Ed #Wenurses #EBP https://twitter.com/EdGenomesEdu/status/836676731402596354
@susanlogan63
28 February 2017 20:38
@WeNurses #wenurses. Not confident but lots of gud resources shared tonite. Thanks
@rarediseaseuk
28 February 2017 20:38
Patients could electronically indicate to a research group that they are interested in participating in a project #WeNurses #Raredisease 2/2
@WeNurses
28 February 2017 20:38
RT @willrhevans: This is not easy. Lots of uncertainty and potential unintended consequences. main thing- takes time. #WeNurses https://t.c…
@cazzyorr
28 February 2017 20:38
Not confident at all hence extending Education platform across all medical and multi professional agendas #patientsafety #WeNurses
@sue_hatton1
28 February 2017 20:39
#WeNurses Couldn't agree more @ChrisMulryan Also CYP/patient/parent stories are very powerful. https://twitter.com/chrismulryan/status/836675658168270848
@carolgair
28 February 2017 20:39
@WeNurses as always; deeper understanding, exposure, supervision, learning #wenurses
@sue_hatton1
28 February 2017 20:39
RT @WeNurses: Brilliant link thank you #WeNurses #EBP https://twitter.com/Caroline_Benj/status/836676060196524033
@WeNurses
28 February 2017 20:39
Interesting #WeNurses https://twitter.com/rarediseaseuk/status/836676748943196160
@Nicola_Pilgrims
28 February 2017 20:39
RT @learnhospice: #WeNurses #devilsadvocate do we sometimes medicalise compassion too much and forget about just being human? https://t.co/…
@Loz_Coult94
28 February 2017 20:39
RT @EdGenomesEdu: @WeNurses communication is the key here. Using the right language is essential #WeNurses
@rarediseaseuk
28 February 2017 20:39
RT @WeNurses: Interesting #WeNurses https://t.co/NRnfukgeia
@sue_hatton1
28 February 2017 20:39
RT @EdGenomesEdu: @WeNurses https://t.co/rNYSmf82mX genomics in healthcare #WeNurses
@WeNurses
28 February 2017 20:40
We agree some great info being shared #WeNurses https://t.co/mmGyukF2L8
@ChrisMulryan
28 February 2017 20:40
S-sever, P-persistent, U-unusual, R-recurrent @ChrisMulryan #WeNurses .
@WeNurses
28 February 2017 20:40
makes sense #Wenurses https://twitter.com/carolgair/status/836677195598823424
@Justdreamingof
28 February 2017 20:40
@mbishop_uk be mindful of assessment too, all photos & measurements can feel very intrusive, especially when is visible condition #WeNurses
@WeNurses
28 February 2017 20:40
RT @ChrisMulryan: S-sever, P-persistent, U-unusual, R-recurrent @ChrisMulryan #WeNurses .
@WeNurses
28 February 2017 20:40
A very good point to consider #WeNurses https://t.co/ShRySINOvi
@PoojaDasani1
28 February 2017 20:40
Absolutely! Including the unsaid actions #WeNurses https://t.co/WT7b8cCaW0
@StayCertifyd
28 February 2017 20:41
RT @EdGenomesEdu: Great Nursing Times article https://t.co/Rm9oYj9eA6 #WeNurses #RareDiseaseDay
@sue_hatton1
28 February 2017 20:41
RT @PoojaDasani1: Absolutely! Including the unsaid actions #WeNurses https://twitter.com/EdGenomesEdu/status/836676380234559489
@ChrisMulryan
28 February 2017 20:41
Also need a high index of suspicion. No one thinks of am immune deficiency until the child has too many infections #WeNurses #RareDiseaseDay
@bradley_juliet
28 February 2017 20:42
RT @WeCYPnurses: Amazing story for tonights #WeNurses chat on Rare Diseases & genomic healthcare, still time to watch & chat at 8pm https:…
@carolgair
28 February 2017 20:42
@WeNurses google image of cylindromas we see in Derm #wenurses https://t.co/EW4c5QS7FZ
@EdGenomesEdu
28 February 2017 20:43
@willrhevans can the @genomicsedu support with these conversations? #WeNurses @WeNurses
@mbishop_uk
28 February 2017 20:44
@Justdreamingof We can all learn a lot from different people's good and not so good experiences #WeNurses
@AgencyNurse
28 February 2017 20:44
@carolgair @WeNurses gosh that looks painful and very distressing for the person - what is the treatment ? #WeNurses
@Nicola_Pilgrims
28 February 2017 20:44
RT @zorgenzo: Advanced Care Planning New Zealand #weNurses #wijVerpleegkundigen https://t.co/PUfWwvZ1Ly
@WeNurses
28 February 2017 20:44
#WeNurses > https://t.co/Txg2wjOdPT
@WeNurses
28 February 2017 20:45
#Wenurses >>> https://twitter.com/GeneticAll_UK/status/836677366814474244
@PoojaDasani1
28 February 2017 20:45
For anyone in the west mids you can find some local support through http://www.westmidsgmc.nhs.uk/education/ #WeNurses
@emmafriedmann
28 February 2017 20:45
RT @claire_adams_: Something that I am about to embark on. #rarediseaseday #research #wenurses https://twitter.com/rarediseaseuk/status/836675537582108673
@carolgair
28 February 2017 20:45
@WeNurses our patients happy to educate staff. Respectful and an interest in them as a person and their condition #wenurses
@AlisonPope4
28 February 2017 20:45
RT @WeNurses: NEXT QUESTION What helpful advice do you have for talking with patients and their families about rare disease? #WeNurses ht…
@EdGenomesEdu
28 February 2017 20:45
@WeNurses does any one have any experiences they would like to share from a patient perspective? #WeNurses @WeNurses
@WeNurses
28 February 2017 20:45
Thank you #WeNurses #EBP https://t.co/dtPrFqCs4T
@rarediseaseuk
28 February 2017 20:45
#Raredisease patients and families are experts in their condition! #WeNurses @WeNurses #RareDiseaseDay
@LearnPEOLC
28 February 2017 20:46
RT @WeNurses: Thank you #WeNurses #EBP https://twitter.com/PoojaDasani1/status/836678689198858242
@cazzyorr
28 February 2017 20:46
Should this be covered in undergraduate programmes? #WeNurses
@GeneticAll_UK
28 February 2017 20:46
RT @rarediseaseuk: #Raredisease patients and families are experts in their condition! #WeNurses @WeNurses #RareDiseaseDay
@LearnPEOLC
28 February 2017 20:46
RT @mbishop_uk: @Justdreamingof We can all learn a lot from different people's good and not so good experiences #WeNurses
@WeNurses
28 February 2017 20:46
Any one tweeting form a patients perspective tonight ? #WeNurses https://twitter.com/EdGenomesEdu/status/836678774808850432
@claire_adams_
28 February 2017 20:46
Signpost #raredisese pt grps to @findacure_fdn who empower & train & encourage collaboration with stakeholders to advance research #wenurses
@AlisonPope4
28 February 2017 20:46
RT @WeNurses: #Wenurses >>> https://twitter.com/GeneticAll_UK/status/836677366814474244
@carolgair
28 February 2017 20:46
@AgencyNurse @WeNurses traditionally patents were scalped. Our unit is trying to manage them surgically but without scalping #wenurses
@PoojaDasani1
28 February 2017 20:46
RT @rarediseaseuk: #Raredisease patients and families are experts in their condition! #WeNurses @WeNurses #RareDiseaseDay
@ChrisMulryan
28 February 2017 20:46
@willrhevans I am always thinking zebras. Need be alert 2 things we might miss. Febrial convulsion no Dx at all just a description #WeNurses
@LearnPEOLC
28 February 2017 20:46
RT @cazzyorr: Should this be covered in undergraduate programmes? #WeNurses
@punc14Nathan
28 February 2017 20:47
RT @WeNurses: We agree some great info being shared #WeNurses https://t.co/mmGyukF2L8
@Justdreamingof
28 February 2017 20:47
@WeNurses I try have resources to give them or signpost to websites & give a list of sources of support so they get reputable info #WeNurses
@AgencyNurse
28 February 2017 20:47
@JonathanCliffe8 i think this is great advice #WeNurses
@AlisonPope4
28 February 2017 20:47
RT @EdGenomesEdu: @WeNurses does any one have any experiences they would like to share from a patient perspective? #WeNurses @WeNurses
@mbishop_uk
28 February 2017 20:47
We think so - what do others think #WeNurses https://t.co/zrjxPUOhQU
@CherokeeMed
28 February 2017 20:47
RT @TRShalley: Have family experience of #rarediseaseday we as nurses are not the experts our patients are we have to listen #wenurses @wen…
@sue_hatton1
28 February 2017 20:47
#WeNurses Really Useful infographic here to help everyone see what the @genomicsedu can offer. https://t.co/IoH6bPEstV
@carolgair
28 February 2017 20:47
@AgencyNurse @WeNurses v lucky in NE England. Great team of medics with fab Newcastle uni links #wenurses
@AgencyNurse
28 February 2017 20:47
@carolgair @WeNurses oh goodness me ! That sounds drastic ! How is the management w/o scalping going ? #WeNurses
@AgencyNurse
28 February 2017 20:48
RT @carolgair: @AgencyNurse @WeNurses v lucky in NE England. Great team of medics with fab Newcastle uni links #wenurses
@susanlogan63
28 February 2017 20:48
i lived with my sis 6 mths not knowing she had Wegener granulomatosis. Feel guilty. I had no idea ! #Wenurses
@mbishop_uk
28 February 2017 20:48
@Justdreamingof @WeNurses Great advice #WeNurses
@EdGenomesEdu
28 February 2017 20:48
#WeNurses What do you think the future may hold for the diagnosis and treatment of rare diseases?
@AgencyNurse
28 February 2017 20:48
@carolgair @WeNurses thats good to hear - if the team have confidence in eachother this often shines through from pt perspective #WeNurses
@AlisonPope4
28 February 2017 20:48
RT @PoojaDasani1: For anyone in the west mids you can find some local support through https://t.co/WQoKrtPT8U #WeNurses
@PoojaDasani1
28 February 2017 20:49
RT @carolgair: @WeNurses our patients happy to educate staff. Respectful and an interest in them as a person and their condition #wenurses
@carolgair
28 February 2017 20:49
@AgencyNurse @WeNurses patients seem to be doing ok. Repeat visitors. But keeping hair and things controlled #wenurses
@Ataxia_and_Me
28 February 2017 20:49
RT @rarediseaseuk: #Raredisease patients and families are experts in their condition! #WeNurses @WeNurses #RareDiseaseDay
@rarediseaseuk
28 February 2017 20:49
Our patient experiences report can help: https://t.co/otsgowpBWH #WeNurses #RareDiseaseDay #RareDisease
@ChrisMulryan
28 February 2017 20:49
@cazzyorr I think so even if it is to just raise awareness #WeNurses
@EdGenomesEdu
28 February 2017 20:49
@rarediseaseuk really useful thank you! #WeNurses
@Polychondritis
28 February 2017 20:50
RT @rarediseaseuk: Our patient experiences report can help: https://t.co/otsgowpBWH #WeNurses #RareDiseaseDay #RareDisease
@alibali50
28 February 2017 20:50
RT @rarediseaseuk: #Raredisease patients and families are experts in their condition! #WeNurses @WeNurses #RareDiseaseDay
@susanlogan63
28 February 2017 20:50
@rarediseaseuk #WeNurses I agree. Knew very little about vasculitis before. My sister lives it now and she teaches me
@WendyWhistles
28 February 2017 20:50
RT @WeNurses: Any one tweeting form a patients perspective tonight ? #WeNurses https://t.co/fkyyM4KWvH
@PoojaDasani1
28 February 2017 20:50
RT @rarediseaseuk: Our patient experiences report can help: https://t.co/otsgowpBWH #WeNurses #RareDiseaseDay #RareDisease
@GeneticAll_UK
28 February 2017 20:50
.@WeNurses our website has some information that might be helpful https://t.co/b3Z0hcOyKx #WeNurses
@EdGenomesEdu
28 February 2017 20:50
RT @GeneticAll_UK: .@WeNurses our website has some information that might be helpful https://t.co/b3Z0hcOyKx #WeNurses
@Bartontd
28 February 2017 20:51
@WeNurses #wenurses As a Father of a Son with a rare disease - its the most incredibly lonely experience - the Family are the experts ...
@claire_adams_
28 February 2017 20:51
RT @GeneticAll_UK: .@WeNurses our website has some information that might be helpful https://www.geneticalliance.org.uk/information/ #WeNurses
@LearnPEOLC
28 February 2017 20:51
#WeNurses - rare disease #NurChat - care homes #FutNur- comorbidities who says women can't multitask....and I'm learning lots (spins plate)
@Polychondritis
28 February 2017 20:51
RT @rarediseaseuk: #Raredisease patients and families are experts in their condition! #WeNurses @WeNurses #RareDiseaseDay
@PoojaDasani1
28 February 2017 20:52
Absolutely essential #WeNurses https://twitter.com/cazzyorr/status/836678927439523840
@AgencyNurse
28 February 2017 20:52
@carolgair @WeNurses thats sounds good - keeping hair must be a huge thing (it would be for me!) #WeNurses
@mbishop_uk
28 February 2017 20:52
RT @Bartontd: @WeNurses #wenurses As a Father of a Son with a rare disease - its the most incredibly lonely experience - the Family are the…
@carolgair
28 February 2017 20:52
@EdGenomesEdu it's exciting! Science will push on. Treatments and cures will be found #wenurses
@EdGenomesEdu
28 February 2017 20:52
RT @PoojaDasani1: Absolutely essential #WeNurses https://twitter.com/cazzyorr/status/836678927439523840
@sue_hatton1
28 February 2017 20:52
#WeNurses @EdGenomesEdu @hee_lisaBP @LordWillisg We recently held a roundtable summary document can be downloaded:… https://twitter.com/i/web/status/836680547502018560
@AgencyNurse
28 February 2017 20:52
@carolgair @WeNurses can you see how Genomes Project may help ? Do many get involved ? #WeNurses
@carolgair
28 February 2017 20:53
@EdGenomesEdu our SM connected world must help that too - Global network of resources ? #wenurses
@willrhevans
28 February 2017 20:53
#WeNurses https://t.co/UOJPqWcRhz
@WeNurses
28 February 2017 20:53
Thanks for sharing Dave - what would have / could help ? #Wenurses https://t.co/bpKBaRaRl5
@PoojaDasani1
28 February 2017 20:53
Great resource #WeNurses https://t.co/sSvQGGDerV
@WeNurses
28 February 2017 20:53
RT @GeneticAll_UK: .@WeNurses our website has some information that might be helpful https://t.co/b3Z0hcOyKx #WeNurses
@WeNurses
28 February 2017 20:53
RT @PoojaDasani1: Great resource #WeNurses https://t.co/sSvQGGDerV
@EdGenomesEdu
28 February 2017 20:54
RT @willrhevans: #WeNurses https://t.co/UOJPqWcRhz
@LearnPEOLC
28 February 2017 20:54
See current #WeNurses chat! https://t.co/S14TAG5iEf
@AlisonPope4
28 February 2017 20:54
RT @GeneticAll_UK: .@WeNurses our website has some information that might be helpful https://t.co/b3Z0hcOyKx #WeNurses
@MEHTCNSs
28 February 2017 20:54
RT @cherylwilson2: Part of wider MDT input clinical support in managing condition and symptoms #wenurses
@WeNurses
28 February 2017 20:54
As we come into the final 7 mins of tonights #WeNurses what are you final thoughts around rare diseases & genomics ? https://t.co/c3WGS9aps0
@carolgair
28 February 2017 20:54
@AgencyNurse @WeNurses we had a talk a couple of weeks ago from our Derm Geneticist. He's amazing! So passionate about it #wenurses
@MEHTCNSs
28 February 2017 20:55
RT @AgencyNurse: Thank you #WeNurses #EBP https://t.co/MA1RiwYbmQ
@EdGenomesEdu
28 February 2017 20:55
RT @WeNurses: As we come into the final 7 mins of tonights #WeNurses what are you final thoughts around rare diseases & genomics ? https://…
@PoojaDasani1
28 February 2017 20:55
RT @sue_hatton1: #WeNurses @EdGenomesEdu @hee_lisaBP @LordWillisg We recently held a roundtable summary document can be downloaded: https:/…
@SuJoly
28 February 2017 20:55
RT @willrhevans: This is not easy. Lots of uncertainty and potential unintended consequences. main thing- takes time. #WeNurses https://t.c…
@mbishop_uk
28 February 2017 20:55
@AgencyNurse @carolgair @WeNurses find out more about how the 100,000 genomes Project will help @GenomicsEngland #WeNurses
@susanlogan63
28 February 2017 20:56
Thanks for all the info on this #RareDiseaseDay. Lots of reading for me !! #WeNurses
@Bartontd
28 February 2017 20:56
@WeNurses Listen to the Family - find them help wherever you can, do not just walk away because you are not familiar with this #wenurses
@AlisonPope4
28 February 2017 20:56
RT @WeNurses: As we come into the final 7 mins of tonights #WeNurses what are you final thoughts around rare diseases & genomics ? https://…
@AgencyNurse
28 February 2017 20:56
RT @mbishop_uk: @AgencyNurse @carolgair @WeNurses find out more about how the 100,000 genomes Project will help @GenomicsEngland #WeNurses
@WeNurses
28 February 2017 20:57
Wise advice - thanks Dave #WeNurses https://twitter.com/Bartontd/status/836681431220912131
@ChrisMulryan
28 February 2017 20:57
Final thought: Let's just listen to parents when they say there is something not right rather than trying to fit kids into R boxes #WeNurses
@mbishop_uk
28 February 2017 20:57
How can we @genomicsedu help support nurses - let us know! #WeNurses https://twitter.com/WeNurses/status/836681094556762112
@susanlogan63
28 February 2017 20:57
@Bartontd @WeNurses #WeNurses Very good advice !
@AgencyNurse
28 February 2017 20:57
And me ! #WeNurses https://twitter.com/susanlogan63/status/836681425155936257
@carolgair
28 February 2017 20:57
@WeNurses if I'd have been smarter, I'd have liked Genetics - was fascinated by wee bit in school #wishful #wenurses
@TRShalley
28 February 2017 20:57
@WeNurses be aware when patients attend with unusual symptoms, think #rarediseaseday and listen to our patient experts #wenurses
@Ataxia_and_Me
28 February 2017 20:57
RT @WeNurses: Thanks for sharing Dave - what would have / could help ? #Wenurses https://twitter.com/Bartontd/status/836680245302423557
@EdGenomesEdu
28 February 2017 20:57
@Bartontd @WeNurses Really interesting Dave. Is more understanding needed from the healthcare perspective #WeNurses
@mbishop_uk
28 February 2017 20:57
Great point @AgencyNurse we are here to help @genomicsedu #WeNurses https://twitter.com/AgencyNurse/status/836681481770713092
@PoojaDasani1
28 February 2017 20:58
So important to talk about #raredisease, share practice and learn from our patients! #WeNurses @westmidsgmc https://twitter.com/WeNurses/status/836681094556762112
@Millymole
28 February 2017 20:58
RT @rarediseaseuk: #Raredisease patients and families are experts in their condition! #WeNurses @WeNurses #RareDiseaseDay
@sue_hatton1
28 February 2017 20:58
@willrhevans #WeNurses Thank you for sharing. Gr8 to have your and other families contributions tonight. https://twitter.com/willrhevans/status/836680700740927488
@NHSRes
28 February 2017 20:58
RT @ClaireW_UK: #whywedoresearch @WeNurses #wenurses followers - interesting tweetchat starting with @FNightingaleF over at #FutNur https:/…
@mbishop_uk
28 February 2017 20:58
Great point - one for all of us to remember #WeNurses https://twitter.com/ChrisMulryan/status/836681643519840260
@WeNurses
28 February 2017 20:58
BIG HUGE THANKS to the amazing @genomicsedu team > @EdGenomesEdu @willrhevans @PoojaDasani1 @sue_hatton1 @mbishop_uk @AlisonPope4 #WeNurses
@willrhevans
28 February 2017 20:58
If things don’t add up , do think of alternative diagnoses- Many years even decades of diagnostic delay common #rarediseaseday #WeNurses
@LearnPEOLC
28 February 2017 20:58
@mbishop_uk @genomicsedu @WeNurses #WeNurses incredibly eye opening chat 2 reflect upon the similarities & differences when caring
@PoojaDasani1
28 February 2017 20:59
RT @learnhospice: @mbishop_uk @genomicsedu @WeNurses #WeNurses incredibly eye opening chat 2 reflect upon the similarities & differences wh…
@SWAN_UK
28 February 2017 20:59
RT @rarediseaseuk: #Raredisease patients and families are experts in their condition! #WeNurses @WeNurses #RareDiseaseDay
@WeNurses
28 February 2017 20:59
Brilliant #WeNurses with so much information and resources shared https://twitter.com/WeNurses/status/836682112333905921
@SWAN_UK
28 February 2017 21:00
RT @rarediseaseuk: .@WeNurses our report found that nurses play a vital role in coordinating care: https://www.raredisease.org.uk/media/1639/rduk-care-coordinator-report.pdf #WeNurses #rared…
@susanlogan63
28 February 2017 21:00
@FabTwin50 Have a look at #wenurses. Lots of great resources there on #RareDiseaseDay !
@top_uk_now
28 February 2017 21:00
https://goo.gl/1dtZMe 37. #caschat 38. #WeNurses 39. #ADEchat 40. #nhswomen 41. #sbswinnershour 42. #secretchef 43. #chesterhour
@AgencyNurse
28 February 2017 21:00
Thank you all - sooo much reading now :D #Wenurses https://twitter.com/WeNurses/status/836682112333905921
@Justdreamingof
28 February 2017 21:00
@WeNurses a rare disease may be interesting but don't invite others to 'view the case'-remember they are a person first & foremost #WeNurses
@leannsweeney
28 February 2017 21:00
RT @TRShalley: Have family experience of #rarediseaseday we as nurses are not the experts our patients are we have to listen #wenurses @wen…
@WeNurses
28 February 2017 21:00
RT @PoojaDasani1: So important to talk about #raredisease, share practice and learn from our patients! #WeNurses @westmidsgmc https://t.co/…
@mbishop_uk
28 February 2017 21:00
Thanks @WeNurses great chat with amazing input from all #WeNurses https://twitter.com/WeNurses/status/836682112333905921
@PoojaDasani1
28 February 2017 21:00
RT @mbishop_uk: Great point - one for all of us to remember #WeNurses https://twitter.com/ChrisMulryan/status/836681643519840260
@sue_hatton1
28 February 2017 21:01
#WeNurses @genomicsedu Are always listening to see how we can help. ?? at GEP website: http://bit.ly/23ZIf26
@WeNurses
28 February 2017 21:01
An important point #WeNurses https://twitter.com/Justdreamingof/status/836682510796996608
@EdGenomesEdu
28 February 2017 21:01
#WeNurses Thanks to all tonight really interesting discussion
@EdGenomesEdu
28 February 2017 21:01
RT @sue_hatton1: #WeNurses @genomicsedu Are always listening to see how we can help. ?? at GEP website: https://t.co/kKNKyE74NA
@punc14Nathan
28 February 2017 21:01
RT @Bartontd: @WeNurses #wenurses As a Father of a Son with a rare disease - its the most incredibly lonely experience - the Family are the…
@cazzyorr
28 February 2017 21:01
RT @mbishop_uk: Great point - one for all of us to remember #WeNurses https://t.co/nsfjVwPUbo
@WeNurses
28 February 2017 21:02
@EdGenomesEdu thanks for your tweets Ed - wonderfully informative :) #WeNurses
@mbishop_uk
28 February 2017 21:02
Great advice #WeNurses https://t.co/xTkv4oMXkV
@AlisonPope4
28 February 2017 21:02
RT @sue_hatton1: #WeNurses @genomicsedu Are always listening to see how we can help. ?? at GEP website: http://bit.ly/23ZIf26
@WeNurses
28 February 2017 21:02
Thanks Sue for all the fab links this evening #WeNurses #EBP https://twitter.com/sue_hatton1/status/836682661540286465
@mbishop_uk
28 February 2017 21:02
Another great point #WeNurses https://twitter.com/JonathanCliffe8/status/836682644742078464
@EdGenomesEdu
28 February 2017 21:02
RT @mbishop_uk: Great advice #WeNurses https://twitter.com/claire_adams_/status/836682632599588864
@WeNurses
28 February 2017 21:02
For the chat cloud enthusiast :) find them and much more in tonights #wenurses chat archive here… https://t.co/TgiVhNQUTh
@willrhevans
28 February 2017 21:03
@edgenomesedu Cheers Ed. #WeNurses
@Bartontd
28 February 2017 21:03
@EdGenomesEdu @WeNurses #wenurses With rare disease the patient & family are the experts, but they are alone without your support #BE #THERE
@PoojaDasani1
28 February 2017 21:03
Thank you for hosting a great chat #WeNurses https://twitter.com/WeNurses/status/836682112333905921
@WeNurses
28 February 2017 21:03
RT @Bartontd: @EdGenomesEdu @WeNurses #wenurses With rare disease the patient & family are the experts, but they are alone without your sup…
@EdGenomesEdu
28 February 2017 21:03
@willrhevans Thanks so much Will! #WeNurses
@sue_hatton1
28 February 2017 21:04
#WeNurses Many thanks for hosting. Really enjoyed chat. A big thank you 2 everyone for all of your very valuable contributions.
@AlisonPope4
28 February 2017 21:04
RT @WeNurses: For the chat cloud enthusiast :) find them and much more in tonights #wenurses chat archive here https://t.co/GqKlCRGj4R htt…
@EdGenomesEdu
28 February 2017 21:04
RT @Bartontd: @EdGenomesEdu @WeNurses #wenurses With rare disease the patient & family are the experts, but they are alone without your sup…
@sue_hatton1
28 February 2017 21:04
RT @WeNurses: For the chat cloud enthusiast :) find them and much more in tonights #wenurses chat archive here https://t.co/GqKlCRGj4R htt…
@AlisonPope4
28 February 2017 21:04
RT @Bartontd: @EdGenomesEdu @WeNurses #wenurses With rare disease the patient & family are the experts, but they are alone without your sup…
@EdGenomesEdu
28 February 2017 21:04
@PoojaDasani1 Thanks Pooja! #WeNurses
@mbishop_uk
28 February 2017 21:04
Wise words from someone who is living the expereince #WeNurses https://t.co/7Ci0CLoraf
@WeNurses
28 February 2017 21:05
@PoojaDasani1 thank you for sharing your expertise with us all #Wenurses
@WeEOLC
28 February 2017 21:05
.@nursingbard we've got our work cut out for next week chat http://www.wecommunities.org/tweet-chats/chat-calendar?filter=WeEOLC following #WeNurses #Nurchat… https://twitter.com/i/web/status/836683740172648449
@Bartontd
28 February 2017 21:05
@EdGenomesEdu @WeNurses #wenurses A Rare Disease is a Lonely experience - no one understands.. find them the #Support #Networks & Resources
@WeNurses
28 February 2017 21:05
RT @WeEOLC: .@nursingbard we've got our work cut out for next week chat https://t.co/7mWp6PWN0E following #WeNurses #Nurchat #FutNur tonigh…
@WeNurses
28 February 2017 21:06
RT @Bartontd: @EdGenomesEdu @WeNurses #wenurses A Rare Disease is a Lonely experience - no one understands.. find them the #Support #Networ…
@PoojaDasani1
28 February 2017 21:06
Thanks @genomicsedu for getting us talking about an important subject #WeNurses https://t.co/UQtRRqUsdW
@WeNurses
28 February 2017 21:06
#WeNurses >>>> https://t.co/wDkrlXMldd
@LearnPEOLC
28 February 2017 21:06
RT @WeEOLC: .@nursingbard we've got our work cut out for next week chat https://t.co/7mWp6PWN0E following #WeNurses #Nurchat #FutNur tonigh…
@MelodyCarter12
28 February 2017 21:07
RT @WeNurses: Nursing in the 21st century: Demystifying rare disease with @NHS_HealthEdEng > https://t.co/S96I28uMkr #WeNurses TONIGHT at…
@Bartontd
28 February 2017 21:07
#wenurses Nice challenging chat - thank you all - much to reflect on......
@Jacquelin_Joyce
28 February 2017 21:09
RT @sue_hatton1: #WeNurses Really Useful infographic here to help everyone see what the @genomicsedu can offer. https://t.co/IoH6bPEstV
@NurChat
28 February 2017 21:09
RT @WeEOLC: .@nursingbard we've got our work cut out for next week chat https://t.co/7mWp6PWN0E following #WeNurses #Nurchat #FutNur tonigh…
@ClareNash20
28 February 2017 21:09
Involve the pt in Other ways when they r well. E.g. Experience based design #ebd #WeNurses https://t.co/KZhCEPDxco
@WeNurses
28 February 2017 21:10
RT @ClareNash20: Involve the pt in Other ways when they r well. E.g. Experience based design #ebd #WeNurses https://t.co/KZhCEPDxco
@WeNurses
28 February 2017 21:11
RT @PoojaDasani1: Thanks @genomicsedu for getting us talking about an important subject #WeNurses https://t.co/UQtRRqUsdW
@Bartontd
28 February 2017 21:11
#wenurses Sam is recieving groundbreaking new treatment for his vascular abnormality & pain using Chemotherapy - pushing the boundaries !!
@sue_hatton1
28 February 2017 21:11
RT @PoojaDasani1: Thanks @genomicsedu for getting us talking about an important subject #WeNurses https://twitter.com/EdGenomesEdu/status/836683578717188103
@CaS_Genomics
28 February 2017 21:11
RT @PoojaDasani1: So important to talk about #raredisease, share practice and learn from our patients! #WeNurses @westmidsgmc https://t.co/…
@Jacquelin_Joyce
28 February 2017 21:11
RT @Bartontd: @EdGenomesEdu @WeNurses #wenurses With rare disease the patient & family are the experts, but they are alone without your sup…
@ktshepherd1
28 February 2017 21:11
RT @WeEOLC: .@nursingbard we've got our work cut out for next week chat https://t.co/7mWp6PWN0E following #WeNurses #Nurchat #FutNur tonigh…
@WeNurses
28 February 2017 21:11
This is good to hear Dave :) #Wenurses https://t.co/9lz0Qcr2cz
@sianjackson1
28 February 2017 21:12
RT @rarediseaseuk: #Raredisease patients and families are experts in their condition! #WeNurses @WeNurses #RareDiseaseDay
@sue_hatton1
28 February 2017 21:12
RT @rarediseaseuk: #Raredisease patients and families are experts in their condition! #WeNurses @WeNurses #RareDiseaseDay
@LausPiercy
28 February 2017 21:14
RT @Bartontd: #wenurses Sam is recieving groundbreaking new treatment for his vascular abnormality & pain using Chemotherapy - pushing the…
@PoojaDasani1
28 February 2017 21:14
RT @ClareNash20: Involve the pt in Other ways when they r well. E.g. Experience based design #ebd #WeNurses https://t.co/KZhCEPDxco
@Bartontd
28 February 2017 21:16
@WeNurses Sclerosing agent - localised Chemotherapy Bleomycin - https://www.southtees.nhs.uk/services/plastic-surgery/vascular-birthmark-clinic/ World Leading #wenurses
@Bartontd
28 February 2017 21:16
@WeNurses Sclerosing agent - localised Chemotherapy Bleomycin - http://ln.is/www.southtees.nhs.uk/ZASZW World Leading #wenurses
@WeNurses
28 February 2017 21:17
Missed any of tonights #WeNurses on Rare Diseases with @genomicsedu ? The transcript is up >… https://twitter.com/i/web/status/836686682464403456
@kellyanne2378
28 February 2017 21:17
RT @rarediseaseuk: Our patient experiences report can help: https://t.co/otsgowpBWH #WeNurses #RareDiseaseDay #RareDisease
@kellyanne2378
28 February 2017 21:18
RT @rarediseaseuk: .@WeNurses our report found that nurses play a vital role in coordinating care: https://www.raredisease.org.uk/media/1639/rduk-care-coordinator-report.pdf #WeNurses #rared…
@Jacquelin_Joyce
28 February 2017 21:19
RT @WeNurses: For the chat cloud enthusiast :) find them and much more in tonights #wenurses chat archive here https://t.co/GqKlCRGj4R htt…
@AS_UK
28 February 2017 21:20
RT @WeNurses: An important point #WeNurses https://twitter.com/Justdreamingof/status/836682510796996608
@Jacquelin_Joyce
28 February 2017 21:20
RT @WeNurses: Thanks Sue for all the fab links this evening #WeNurses #EBP https://twitter.com/sue_hatton1/status/836682661540286465
@PoojaDasani1
28 February 2017 21:20
For anyone who wasn't about to join tonights #raredisease chat on #wenurses. Here is the transcript @westmidsgmc https://twitter.com/WeNurses/status/836686682464403456
@WeNurses
28 February 2017 21:25
Thursdays #WeNurses is all around malnutrition screening > http://buff.ly/2mzHM9g https://t.co/ErxDRThCbD
@cortina_borja
28 February 2017 21:26
RT @rarediseaseuk: #Raredisease patients and families are experts in their condition! #WeNurses @WeNurses #RareDiseaseDay
@Smileguardians
28 February 2017 21:28
RT @WeNurses: Thursdays #WeNurses is all around malnutrition screening > http://buff.ly/2mzHM9g https://t.co/ErxDRThCbD




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