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Turning the tide for rare disease

Turning the tide for rare disease

Rare Land: a Greek film shining a light on alpha mannosidosis and rare disease

By CONTRIBUTOR
12 December 2022

RARE News

CureDuchenne raises more than $1.5 million at eighth annual Napa in Newport to help find a cure for Duchenne muscular dystrophy

By admin
8 December 2022

RARE News

NFL players spotlight Sickle Cell Disease Association of America

By admin
7 December 2022

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
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