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Turning the tide for rare disease
Turning the tide for rare disease
Research into diagnostic tests celebrated at international conference
By CONTRIBUTOR
9 October 2024
Turning the tide for rare disease
Sickle cell disease: The urgent need for better care, increased research funding and better treatment options
By CONTRIBUTOR
8 September 2024
Turning the tide for rare disease
Rare Patient Voice: Helping patients and caregivers share their voices
By CONTRIBUTOR
28 August 2024
Turning the tide for rare disease
I am Celine Dion: The stiff person syndrome community reacts to the release of Dion’s documentary
By CONTRIBUTOR
22 July 2024
Turning the tide for rare disease
The UK General Election 2024: Ensuring rare diseases remain a priority
By CONTRIBUTOR
24 June 2024
Turning the tide for rare disease
Accelerating treatment access in the United States through financial assistance, education and advocacy
By CONTRIBUTOR
6 June 2024
Turning the tide for rare disease
A rare dad’s journey: Inspiring change for the rare disease community in Rwanda
By CONTRIBUTOR
22 May 2024
Turning the tide for rare disease
Jenny Decker attempts to sail solo around the globe to raise awareness of Charcot-Marie-Tooth disease
By CONTRIBUTOR
15 April 2024
Turning the tide for rare disease
Guiding Grayson: a family’s fight to advocate, educate and save their son, Grayson, from CLN3 Batten Disease
By CONTRIBUTOR
21 February 2024
Turning the tide for rare disease
Congenital muscular dystrophy: Kelly and Avery’s mission to challenge perceptions of disability
By CONTRIBUTOR
7 February 2024
Turning the tide for rare disease
Alpha-1: best practices for testing for this and other late-onset genetic diseases
By CONTRIBUTOR
30 August 2023
Turning the tide for rare disease
Life in the slow lane: finding strength after ataxia diagnosis
By CONTRIBUTOR
23 August 2023
Turning the tide for rare disease
Changing the landscape for the differently-abled community one smile at a time. Dr Sai Kaustuv is our RARE Inspiration
By CONTRIBUTOR
10 May 2023
Turning the tide for rare disease
Arianna’s Magic Boots: stamping out a taboo in children’s books
By CONTRIBUTOR
26 April 2023
Turning the tide for rare disease
FOP Friends: celebrating a decade of support for the fibrodysplasia ossificans progressiva community
By CONTRIBUTOR
19 April 2023
Turning the tide for rare disease
Lea Jabre: helping to lift the voice of the stiff person community
By CONTRIBUTOR
22 March 2023
Turning the tide for rare disease
Aaron Jackson: raising awareness of organ donation, and bringing hope to the transplant community
By CONTRIBUTOR
15 February 2023
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