Patient voice

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

Medical

Goal Attainment Scaling: delivering patient-centred clinical trials using personalised outcome measures

By Geoff Case

11 September 2024

Industry Insights

NICE’s key developments in 2024 in summary

By CONTRIBUTOR

11 September 2024

Charity & advocacy

Hope on the horizon: celebrating two years of Hereditary Brain Aneurysm Support and a bright future ahead

By CONTRIBUTOR

10 September 2024

Turning the tide for rare disease

Sickle cell disease: The urgent need for better care, increased research funding and better treatment options

By CONTRIBUTOR

8 September 2024

Patient voice

Find the power in you

By CONTRIBUTOR

4 September 2024

RARE News

UK LSD Collaborative set to release new short—‘Hadid and I’

By admin

2 September 2024

RARE News

Make your voice heard: Participate in the Rare Barometer Survey on the impact of living with a rare diseases on everyday life

By admin

2 September 2024

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