Patient voice

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

Turning the tide for rare disease

Alpha-1: best practices for testing for this and other late-onset genetic diseases

By admin

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 admin

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

RARE News

IGA issues position statement on non-comparable medicines

By admin

15 August 2023

RARE News

Double dose of suffering: how the war in Ukraine has affected patients with rare diseases

By admin

14 August 2023

RARE Ramblings

Richard’s RARE Ramblings: accommodating for rare conditions

By admin

9 August 2023

RARE News

Landmarks illuminate pink and purple for National Eosinophilic Week

By admin

4 August 2023

Charity & advocacy

Creld1 Warriors—bringing the scientific and parent community together

By admin

2 August 2023

A day in the life

A day in the life: graduation day for Raymond Huml’s son, Jon

By admin

25 July 2023

RARE News

Pulitzer Prize-winning journalist Amy Dockser Marcus and Rebel Health author Susannah Fox to deliver keynotes at 12th annual RARE Advocacy Summit

By admin

19 July 2023

Charity & advocacy

Connie Montgomery’s late diagnosis with two rare diseases: factor VII deficiency and pemphigus vulgaris

By admin

19 July 2023

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