Jenni Minto MSP SWAN UK (syndromes without a name) PIP-UK We also look forward to taking up the offer from the Minister to share and discuss the priorities around #pathways of care, faster and better #diagnosis and #CareCoordination raised at the meeting. Thank you again to all the attendees. SWAN UK (syndromes without a name) PIP-UK

#EDIRA Thanks Astellas Pharma US NIHR BioResource Takeda LifeArc for your sponsorship. We are so committed to the practice of inclusive research. We present this symposium in partnership with University of Chester Intent Health PIP-UK . Register here eventbrite.co.uk/e/edira-2024-b…

Thank you Genetic Alliance UK and especially Natalie for this event, it was a real historical occasion for Poland Syndrome to be at Scottish Parliament and we are so proud of Jack.

A special day and we look forward to working with Genetic Alliance UK and Scottish Government on treatment plans for rare disease and more.

The most special videos of the amazing ladies in our community. Thank you Smiley News for sharing our stroies and to the amazing members of our community that took part. Becca Butcher 💕, Polina, Erika, Gift, Caron and Grace.

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Such a special event in the rare calendar from RareQoL Secure your ticket now.

Good luck to Keir Harding when competing in the British Powerlifting Championships today. Keir lives with #PolandSyndrome, characterised by under-developed or missing chest muscles. Join us in wishing him luck in the comments and read about his journey: geneticalliance.org.uk/.../keirs-powe…

Join us and Kerry @buttahflyK during #Dazzle4Rare2024 @dazzle4Rare and be #StrongerTogether we support the #Dazzle4Rare community at @Ataxia_and_me #Ataxia #RareDisease #charity Wales

Ataxia is a #Greek word meaning "Lack of order" our mission is to bring some order to the lack of order Join us during #Dazzle4Rare2024 @dazzle4Rare we support the #Dazzle4Rare community at @Ataxia_and_me #Ataxia #RareDisease #charity Wales

Old poster #Ataxia could be the most serious condition you've never heard of.... Patients helping #patients #Dazzle4Rare #Dazzle4Rare2024 #RareDisease #StrongerTogether

Happy to be part of the dazzle4rare family! Want to join? Get in touch n follow us ➡️ #dazzle4rare

@rare_youth_revolution #Dazzle4Rare2024 #wearestrongertogether

#Dazzle4Rare2024 take a look at Kerry’s website & profile here. A writer & patient advocate, supporting those living with rare, disability & invisible illnesses: a.co/d/2hBoABS Float Like a Buttahfly 🦋 Kerry Wong

#Dazzle4Rare2024 The World Alliance of Pituitary Organizations: https://www.wapo.orgL WAPO dazzle4rare

Why do we use the hashtag #URCIID alongside #Dazzle4Rare? URCIID stands for undiagnosed, chronically and invisibly ill, and disabled. We are #intersectional communities. #RareDisease isn't ONE thing. #Facts #Truth

5 things to know about #APS dazzle4rare. #AntiphospholipidSyndrome is can cause blood clots in arteries and veins. This rare autoimmune blood disorder affects 1 in 2,000 pts. 🔗 myseveralworlds.com/antiphospholip… #Dazzle4Rare #Dazzle4Rare2024 #RareDiseaseAwareness #StrutYourStripes

Make the #Future #Awesome .... #Dazzle4Rare2024 dazzle4rare we support the #Dazzle4Rare community at Ataxia and Me CIO 1184030 #Ataxia #RareDisease #charity Wales

#Dazzle4Rare #Dazzle4Rare2024 great to see so much interaction between us all, #LiftingEachOtherUp #StrongerTogether dazzle4rare Ataxia and Me CIO 1184030 NCBRS Worldwide Foundation - Nicolaides Baraitser Flutters and Strutters (Formerly FibroFlutters) Float Like a Buttahfly 🦋 Kerry Wong Judy-The United Advocate Caring Hands Sarcoid Rare Patient Voice International Foundation for AiArthritis Rare Patient Voice

Such an achievement, congratulations Keir Harding