Patient voice

Patient voice

How CLN2 Batten disease changed our life: “A Mother’s Love”

By CONTRIBUTOR

16 May 2024

Industry Insights

What are the next steps for rare disease innovation in the United Kingdom?

By CONTRIBUTOR

15 May 2024

RARE News

Global nonprofit CureDuchenne to host FUTURES National Conference for the Duchenne and Becker muscular dystrophy community (May 23-26, Orlando, Florida)

By admin

14 May 2024

RARE News

Happy Heart Week: raising awareness of Barth syndrome—over a decade of hope and support

By admin

9 May 2024

Science & tech

Precision in patient data: How genetic databases are helping to shape rare disease population studies

By CONTRIBUTOR

8 May 2024

RARE News

The Jackson Laboratory receives $8 million in federal funding to expand research capacity in rare diseases

By admin

6 May 2024

RARE News

PTLS HOPE Research Foundation: A new nonprofit focused on advancing research and raising awareness for Potocki Lupski syndrome

By admin

3 May 2024

RARE News

Meeting the needs of the Smith-Magenis syndrome community: PRISMS presents a guidebook with strategies and recommendations

By admin

2 May 2024

RARE News

Neurocrine Biosciences launches WHAT THE C@H?! educational initiative to support congenital adrenal hyperplasia community

By admin

1 May 2024

A day in the life

If you’re not dancing, something is wrong…

By CONTRIBUTOR

1 May 2024

RARE News

Survey launched for UK-based rare disease patient advocacy groups on gene therapy decision aids

By admin

30 April 2024

Sunday sessions

Goodness and mercy: my lupus journey

By CONTRIBUTOR

28 April 2024

RARE News

DEBRA UK partners with the Cancer Research UK Scotland Institute to tackle early-onset cancer in patients with RDEB

By admin

25 April 2024

RARE News

NCBRS Worldwide Foundation announces inaugural “UNITED AGAIN” Family Conference – UK 2024

By admin

23 April 2024

A day in the life

A day in the life: living with dyskeratosis congenita (DC)—Paula’s story

By CONTRIBUTOR

19 April 2024

Turning the tide for rare disease

Jenny Decker attempts to sail solo around the globe to raise awareness of Charcot-Marie-Tooth disease

By CONTRIBUTOR

15 April 2024

RARE News

DREAMS: a new Horizon Europe project brings hope to rare disease patients

By admin

12 April 2024

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