RARE News

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

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14 May 2024

RARE News

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

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9 May 2024

RARE News

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

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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

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1 May 2024

RARE News

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

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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

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10 April 2024

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New report: If Only You Knew

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10 April 2024

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Nxera Pharma joins the World Orphan Drug Alliance

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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

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3 April 2024

RARE News

SMA Europe launches its 12th call for research

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3 April 2024