Charity & advocacy

Charity & advocacy

Rare Disease Awareness Day Calendar

By CONTRIBUTOR

14 February 2024

A day in the life

Don’t let your condition define you! David’s journey with stiff person syndrome

By CONTRIBUTOR

14 February 2024

Industry Insights

Rare Disease Day 2024: Sheela Upadhyaya previews some of the events taking place across the world

By CONTRIBUTOR

14 February 2024

Industry Insights

The UK Rare Diseases Framework: Sheela Upadhyaya reflects on recent progress across the UK

By CONTRIBUTOR

12 February 2024

Patient voice

Love isn’t rare—Ken To’s journey with Huntington’s disease

By CONTRIBUTOR

11 February 2024

RARE News

MEF2C Foundation & MUSC launch program to develop MEF2C therapeutics

By admin

9 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

RARE News

National Tay-Sachs & Allied Diseases Association hosts first of its kind drug development meeting for GM2

By admin

2 February 2024

RARE News

Get Ready to #ShowYourStripes for Rare Disease Day 2024 29th February: the rarest day of the year!

By admin

1 February 2024

Patient voice

If you want to make God laugh, tell him about your plans

By CONTRIBUTOR

31 January 2024

RARE News

CureDuchenne announces educational events for families and caregivers of individuals with Duchenne or Becker muscular dystrophy

By admin

31 January 2024

RARE News

Sickle Cell Disease Association of America Inc. appoints two to board

By admin

29 January 2024

RARE News

American Kidney Fund announces April 30 as the first annual APOL1-mediated kidney disease (AMKD) awareness day

By admin

26 January 2024

Science & tech

Faster diagnosis for patients with rare diseases

By CONTRIBUTOR

24 January 2024

RARE News

REGISTER NOW for M4RD’s ANNUAL SYMPOSIUM

By admin

23 January 2024

RARE News

New research puts the spotlight on tube feeding

By admin

23 January 2024

RARE News

CureDuchenne Welcomes Patricia Brown as Senior Director of Community Engagement

By admin

23 January 2024

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