Charity & advocacy

Charity & advocacy

A Rare Find: upcoming comedy short wants to create conversation around newborn screening

By admin

27 September 2023

RARE News

Sickle Cell Disease Association of America holds national convention

By admin

27 September 2023

RARE News

World Orphan Drug Congress Europe 2023

By admin

27 September 2023

RARE News

Cooking challenge to raise funds for muscular dystrophy charity gets the backing of celebrity chefs and celebrities from across the UK

By admin

26 September 2023

Industry Insights

Living well with a rare disease: are we really supporting our community to achieve this?

By admin

25 September 2023

Patient voice

Living with cold agglutinin disease: Jörg’s story

By admin

25 September 2023

RARE News

Congratulations to the 2023 winners of the Global Genes Open Science Data Challenge

By admin

22 September 2023

RARE News

CureDuchenne launches the CureDuchenne Caregiver Course: a free virtual resource for Duchenne muscular dystrophy caregivers

By admin

21 September 2023

Charity & advocacy

Mitochondrial disease awareness week: let’s move the needle towards effective treatments and cures

By admin

20 September 2023

RARE News

EveryLife Foundation study measures economic impact of delayed diagnosis of rare diseases

By admin

18 September 2023

A day in the life

A day in the life: a glimpse into my life living with scleroderma

By admin

15 September 2023

RARE News

Uncommon knowledge

By admin

13 September 2023

Patient voice

The physical, mental, and emotional toll of Charcot-Marie-Tooth disease: Joe Hogan’s story

By admin

13 September 2023

RARE News

W. David Arnold, MD joins CMT Research Foundation Advisory Board

By admin

7 September 2023

Medical

Transitioning successfully from paediatric to adult care in Duchenne muscular dystrophy

By admin

6 September 2023

RARE News

Sickle Cell Disease Association recognises Sickle Cell Awareness Month

By admin

5 September 2023

RARE News

Dyne Therapeutics and CureDuchenne partner to give the gift of mobility to two local families

By admin

30 August 2023

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