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Turning the tide for rare disease
Turning the tide for rare disease
Becker muscular dystrophy patients find hope in building a community
By CONTRIBUTOR
4 December 2024
Turning the tide for rare disease
flok, pioneering patient-led research for inherited metabolic disorders (IMD)
By CONTRIBUTOR
3 December 2024
Turning the tide for rare disease
Bridging the gap: health inequalities and rare diseases
By CONTRIBUTOR
29 November 2024
Turning the tide for rare disease
Rare disease—self-advocacy and getting needs met!
By CONTRIBUTOR
28 November 2024
Turning the tide for rare disease
Access to spinal muscular atrophy (SMA) treatment in Denmark: a success story of how persistence can win in the end
By CONTRIBUTOR
15 November 2024
Turning the tide for rare disease
The Acromegaly Community: An international haven for people living with acromegaly
By CONTRIBUTOR
1 November 2024
Turning the tide for rare disease
Bringing light into the world: the father running over 200 miles for Angelman Syndrome
By CONTRIBUTOR
16 October 2024
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
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