Turning the tide for rare disease

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

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

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