RARE News

Country music legend Alan Jackson’s ‘Last Call’ tour to have a dual legacy

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6 June 2024

RARE News

Global Liver Institute applauds ​​US representative Nydia Velázquez’s reintroduction of the Liver Illness, Visibility, Education and Research Act (LIVER Act)

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4 June 2024

RARE News

UK charity backs calls for improved support for carers

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4 June 2024

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Families fight for rare epilepsy breakthrough and find it through a unique collaboration

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28 May 2024

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Pop-up hospital gives chronically ill kids a summer camp

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24 May 2024

RARE News

SMA Europe launches “real-life stories” to show how access to treatment and care impacts people living with spinal muscular atrophy

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22 May 2024

RARE News

The Oxford-Harrington Rare Disease Centre announces newly funded grant award programmes to develop new therapies for Friedreich’s ataxia

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22 May 2024

RARE News

DEBRA UK supports the Burma Skincare Initiative at the Chelsea Flower Show

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21 May 2024

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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

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

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9 May 2024

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

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6 May 2024

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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

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

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2 May 2024

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

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1 May 2024

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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