RARE News

RARE News

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

By Becky Pender

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

RARE News

Turning hope into action: The story of Happy Heart Week and a new era for Barth Syndrome

By admin

16 May 2025

RARE News

NephCure to recognise IgA nephropathy (IgAN) awareness day on May 14, 2025

By admin

14 May 2025

RARE News

Charity launches appeal to increase research into PSP and CBD

By admin

5 May 2025

RARE News

Global collaboration aims for consensus on Kabuki syndrome clinical management guidelines

By Joe Rumney

30 April 2025

RARE News

Sickle Cell Disease Association of America names events manager

By admin

29 April 2025

RARE News

Graeme Souness to swim the English Channel, there and back, to be the difference for EB

By admin

29 April 2025

RARE News

UK charity releases new funding for research into PSP & CBD

By admin

25 April 2025

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