Charity & advocacy

Charity & advocacy

#DuchenneCan: celebrating what people with Duchenne CAN achieve

By CONTRIBUTOR

5 December 2022

Turning the tide for rare disease

Matt Hay: becoming a neurofibromatosis advocate and giving back to his community

By CONTRIBUTOR

1 December 2022

Turning the tide for rare disease

Jessica Massengale: living strong with scleroderma

By CONTRIBUTOR

24 November 2022

Turning the tide for rare disease

A celebration of 25 years in advocacy: Tanya Collin-Histed, CEO of the International Gaucher Alliance

By CONTRIBUTOR

18 November 2022

Medical

CATNAP® registry: collecting real-world data to enhance understanding of paediatric narcolepsy

By CONTRIBUTOR

17 November 2022

RARE News

DEBRA launches £5m fundraising appeal to stop the pain of EB

By admin

16 November 2022

RARE News

Winners of Gene People Awards 2022 announced

By admin

16 November 2022

RARE REV-inar

Early access pathways to medicines – insights from a multi-stakeholder discussion

By editor

10 November 2022

Turning the tide for rare disease

Finding a cure nobody else is looking for: why Geri and Zach shoot for the moon

By CONTRIBUTOR

31 October 2022

Science & tech

The real-world evidence revolution: how better research can improve patients’ lives

By CONTRIBUTOR

27 October 2022

RARE News

Leading Muscular Dystrophy charity gives petrol heads a ‘driving experience of a lifetime’ as it continues its commitment to delivering life-changing wish-fulfilment experiences to children and young adults

By admin

26 October 2022

RARE News

CureDuchenne launches Occupational therapist certification programme to improve care for individuals with Duchenne muscular dystrophy

By admin

20 October 2022

RARE News

The Student Voice Prize: an international essay competition raising the profile of rare disease

By admin

13 October 2022

Turning the tide for rare disease

What I learned raising a son with haemophilia: Stormy’s story

By CONTRIBUTOR

12 October 2022

RARE News

World Orphan Drug Congress 2022 – Europe’s most exciting orphan drug event

By admin

10 October 2022

RARE News

World Duchenne Organization announces Accredited Duchenne Centers Programme

By admin

7 October 2022

RARE News

Sickle Cell Disease Association holds 50th annual national convention virtually

By admin

5 October 2022

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