RARE News

cTAP Study indicates Duchenne muscular dystrophy clinical trial enrollment criteria should expand beyond ambulatory status

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29 July 2024

RARE News

Landmarks shine pink and purple for National Eosinophilic Week

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29 July 2024

RARE News

The CMT Research Foundation’s 2024 Global CMT Research Convention to gather renowned scientific experts and patients to discuss status of treatments and cures for Charcot-Marie-Tooth (CMT) disease

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19 July 2024

RARE News

NHL All-Star Ryan Getzlaf returns to the links for the 13th Annual Getzlaf Golf Shootout on September 13-14, benefiting CureDuchenne

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17 July 2024

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

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12 July 2024

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

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12 July 2024

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

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9 July 2024

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

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28 June 2024

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

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25 June 2024

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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

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

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7 June 2024

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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

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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