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Turning the tide for rare disease
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
Turning the tide for rare disease
CMTC-OVM: improving the lives of people with blood vessel abnormalities (vascular malformations)
By CONTRIBUTOR
3 October 2022
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