RARE News

RARE News

International conference and ultra-rare research on Ring20 epilepsy set for Coventry

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3 September 2026

RARE News

Rare disease nonprofit celebrates 30 years

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27 August 2026

RARE News

Muscle Help Foundation becomes title partner of South East Powerchair Football League

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21 August 2026

RARE News

On Coats’ Disease Awareness Day, foundation announces groundbreaking research effort to develop first validated animal model for the rare eye disease

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17 August 2026

RARE News

RARE Drug Development Symposium marks 10th anniversary with dedicated pitch sessions and the theme and call to action to align advocates, science and industry

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12 August 2026

RARE News

Koolen-de Vries Syndrome Foundation and Children’s Hospital Colorado launch first U.S. multidisciplinary clinic, titled the Kool Klinic

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12 August 2026

RARE News

National quality standard awarded to PSPA in recognition of outstanding volunteer support

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10 August 2026

RARE News

Jack McGovern Coats’ Disease Foundation celebrates 20 years of hope, progress, and the pursuit of a cure

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7 August 2026

RARE News

How a patient advocacy group transformed one of the world’s smallest rare disease communities into a global research network

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27 July 2026

RARE News

The Lilly and Blair Foundation announces inaugural Strategic Research Grant Awards

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27 July 2026

RARE News

145 landmarks across Australia and New Zealand light up for National Eosinophilic Week

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21 July 2026

RARE News

From charity to MedTech innovator: Keep Me Breathing launches 1,000-mile ‘Ride for Rare’ validation challenge for wearable CO2 monitor

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10 July 2026

RARE News

CureDuchenne launches ‘A Cure Can’t Wait’ PSA Campaign, using the power of a birthday to inspire public action for Duchenne muscular dystrophy

By admin

10 July 2026

RARE News

EURORDIS Rare Barometer reveals mental health crisis in rare disease community

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3 July 2026

RARE News

Sickle Cell Disease Association of America Inc. appoints Akua Okunseinde to board

By admin

3 July 2026

RARE News

SAVE THE DATE: 2nd International Clinical Care Symposium on Spinal Muscular Atrophy

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3 July 2026

RARE News

Charity reveals diagnosis for rare brain diseases hasn’t improved in 10 years

By admin

29 June 2026

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