RARE News

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

Industry Insights

As we enter a new financial year, how does the UK Budget affect the rare disease community?

By CONTRIBUTOR

10 April 2024

RARE News

Multidisciplinary expert panel explores the necessity to “shed light” on rare and undiagnosed diseases: an invitation to attend a live event at Harvard Medical School, in-person or virtually

By admin

10 April 2024

RARE News

AKU Society launches Global Patient Registry to drive research into ultra-rare disease alkaptonuria

By admin

10 April 2024

RARE News

New report: If Only You Knew

By admin

10 April 2024

RARE News

Nxera Pharma joins the World Orphan Drug Alliance

By admin

9 April 2024

RARE News

Eurordis to host 12th European Conference on Rare Diseases and Orphan Products (ECRD 2024)

By admin

4 April 2024

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