RARE News

RARE News

Top North American aortic-awareness organisations stand together to save lives during Aortic Dissection Awareness Week (September 14 – 20, 2025)

By admin

15 September 2025

RARE News

Fundraiser turns to music to raise awareness of rare disease

By admin

15 September 2025

RARE News

Finalists revealed for Little Moments Matter Awards celebrating professionals supporting those with rare form of epilepsy

By admin

12 September 2025

RARE News

Vascular Voice Network launches to unite organisations across the vascular health landscape

By admin

12 September 2025

RARE News

ARRE Foundation launches new website for ASXL community

By admin

10 September 2025

RARE News

Sickle Cell Disease Association recognises Sickle Cell Awareness Month 2025

By Becky Pender, RARE Revolution

4 September 2025

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 Becky Pender, RARE Revolution

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

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2nd MENA Congress for Neurogenetic Disorders 2025

By admin

16 July 2025

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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 Becky Pender, RARE Revolution

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

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