RARE News

Challenges and priorities for the PSP and CBD community: Insights from Mark Jackson

By admin

12 July 2024

RARE News

The CMT Research Foundation to launch grant program to support young investigators working on CMT

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12 July 2024

RARE News

Concerned stakeholders issue call to action on the implementation of the EU Joint Clinical Assessment for ATMPs

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9 July 2024

RARE News

International Neonatal Screening Day: A call for global implementation of neonatal screening programmes

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28 June 2024

RARE News

PSPA event brings together families affected by progressive supranuclear palsy and corticobasal degeneration

By admin

25 June 2024

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

By admin

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

By admin

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

By admin

28 May 2024

RARE News

Pop-up hospital gives chronically ill kids a summer camp

By admin

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

By admin

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

By admin

22 May 2024

RARE News

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

By admin

21 May 2024