RARE News

RARE News

Little Moments Matter: a new film from Dravet Syndrome UK marks Dravet Syndrome Awareness Day

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24 June 2024

RARE News

Cure GABA-A: A year of transformative impact in the GABAAR community

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20 June 2024

RARE News

American Kidney Fund convenes Rare Kidney Disease Action Network to advocate change for patients with rare causes of kidney disease

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18 June 2024

RARE News

Myhre Syndrome Foundation hosts inaugural in-person conference, offering hope and support to the community

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7 June 2024

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

RARE News

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

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28 May 2024

RARE News

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

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

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