RARE News

RARE News

Unlocking the genetics of brain aneurysms: world-leading new UK study aims to transform NHS approach to a potentially inherited silent killer

By admin

2 September 2025

RARE News

The heartbroken parents of a special little boy who ‘touched so many people’s lives’ have pledged to raise over £100,000 in his memory for the new Cambridge Children’s Hospital

By admin

18 August 2025

RARE News

500 miles for Mowat-Wilson syndrome: riders cycle from Montreal to New York to raise awareness

By CONTRIBUTOR

11 August 2025

RARE News

$1.1 Million grant funds research on rare neurodevelopmental disorder MEF2C

By admin

28 July 2025

RARE News

Landmarks across Australia and New Zealand light up pink and purple to raise awareness during National Eosinophilic Week

By admin

21 July 2025

RARE News

2nd MENA Congress for Neurogenetic Disorders 2025

By admin

16 July 2025

RARE News

2nd MENA Congress for Metabolism in Health and Disease 2025

By admin

16 July 2025

RARE News

Calling for implementation of neonatal screening programmes following the WHO resolution on rare diseases

By CONTRIBUTOR

28 June 2025

RARE News

New awards launched to celebrate unsung heroes supporting families living with Dravet Syndrome

By admin

23 June 2025

RARE News

Animation to aid diagnosis of corticobasal degeneration

By admin

18 June 2025

RARE News

New research reveals severe psychological distress experienced by families caring for a child with Dravet Syndrome

By admin

18 June 2025

RARE News

NephCure celebrates inaugural FSGS Awareness Day on June 10, 2025

By admin

29 May 2025

RARE News

CureDuchenne Ventures invests in Entos Pharmaceuticals for development of a redosable, full-length dystrophin gene therapy

By admin

29 May 2025

RARE News

CureDuchenne appoints Brenda Wong, MD, as chief medical advisor to advance research and improve care for individuals with Duchenne and Becker muscular dystrophy

By admin

21 May 2025

RARE News

Sickle Cell Disease Association of America names membership manager

By admin

21 May 2025

RARE News

NHL All-Star Troy Terry and wife Dani to host CureDuchenne golf shootout on September 12–13, continuing a legacy of impact for Duchenne muscular dystrophy

By admin

21 May 2025

RARE News

RARE Revolution expands its legacy with the launch of RARE Revolution insider

By admin

19 May 2025

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