RARE News

RARE News

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

By admin

9 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

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3 May 2024

RARE News

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

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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

RARE News

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

By admin

30 April 2024

RARE News

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

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25 April 2024

RARE News

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

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23 April 2024

RARE News

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

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12 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

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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)

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4 April 2024

RARE News

Miami community comes together for CureDuchenne, raising nearly $2.5M since 2021

By admin

3 April 2024

RARE News

SMA Europe launches its 12th call for research

By admin

3 April 2024

RARE News

Sickle Cell Disease Association of America promotes Kevin Amado Jr.

By admin

27 March 2024

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