Patient voice

Patient voice

What is pain?

By CONTRIBUTOR

9 October 2024

Charity & advocacy

Join the movement: championing care for rare musculoskeletal conditions

By CONTRIBUTOR

9 October 2024

Science & tech

MendelScan—AI for good: informing patient and public perception

By editor

7 October 2024

Medical

Systemic mastocytosis: A new study reveals the perceptions and realities of this rare mast cell disorder

By CONTRIBUTOR

2 October 2024

Industry Insights

Putting patients first?

By CONTRIBUTOR

2 October 2024

RARE News

CMT Research Foundation surpasses $10 Million goal of ENDGAME Capital Campaign

By admin

1 October 2024

RARE News

Sickle Cell Disease Association of America Inc. holds convention in Atlanta

By admin

1 October 2024

Patient voice

My unending search for a diagnosis?

By CONTRIBUTOR

25 September 2024

Science & tech

Improved patient finding strategies for rare diseases – a win-win for patients and drug developers

By CONTRIBUTOR

25 September 2024

RARE News

PSPA invites applications for small research projects looking into PSP & CBD

By admin

24 September 2024

RARE News

13th Annual Getzlaf Golf Shootout raises nearly $500,000 for CureDuchenne, welcoming Troy and Danielle Terry as new hosts

By admin

24 September 2024

RARE News

International Gaucher Alliance celebrates 30 years of international patient advocacy

By Becky Pender

23 September 2024

Charity & advocacy

Haemochromatosis UK helps thousands with life-threatening genetic condition to be diagnosed through postal health kits

By CONTRIBUTOR

18 September 2024

A day in the life

Drunk or disabled? – challenges with ataxia

By CONTRIBUTOR

16 September 2024

Sunday sessions

How reiki, spirituality and faith help me accept life with a rare disease

By CONTRIBUTOR

15 September 2024

Letters

The math is anything but encouraging

By CONTRIBUTOR

12 September 2024

Charity & advocacy

Alex TLC Monthly Research Summaries

By CONTRIBUTOR

12 September 2024

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