Patient voice

Patient voice

Living with cold agglutinin disease: Jörg’s story

By CONTRIBUTOR

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 CONTRIBUTOR

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 CONTRIBUTOR

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 CONTRIBUTOR

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 CONTRIBUTOR

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

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

RARE News

Million Dollar Bike Ride pilot grant program request for applications

By admin

24 August 2023

Turning the tide for rare disease

Life in the slow lane: finding strength after ataxia diagnosis

By CONTRIBUTOR

23 August 2023

RARE News

NHL All-Star Ryan Getzlaf returns to the links for the 12th annual Getzlaf Golf Shootout on September 9 benefiting CureDuchenne

By admin

16 August 2023

Science & tech

Marie Curie: the inspiring legacy of a great woman of science and our RARE inspiration

By CONTRIBUTOR

16 August 2023

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