RARE News

RARE News

Charity survey shows 60% of people with PSP and CBD are misdiagnosed

By admin

17 June 2023

RARE REV-inar

Gene therapies: a new age of care in rare diseases?

By editor

14 June 2023

RARE News

Cure Mito Foundation launches resource on Leigh syndrome

By admin

9 June 2023

Charity & advocacy

Global Genes and Cure JM Foundation: expanding mental health support for the rare disease community

By CONTRIBUTOR

7 June 2023

RARE News

DNA sequencing in newborns reveals years of actionable findings for infants and families

By admin

5 June 2023

RARE News

Global Genes’ RARE-X issues open call to researchers to participate in the Inaugural Xcelerate RARE Challenge

By admin

31 May 2023

Patient voice

Together—every step

By CONTRIBUTOR

31 May 2023

RARE News

American Kidney Fund will host cystinosis camp as part of national virtual camp for children and teens with kidney disease

By admin

25 May 2023

A day in the life

A day in the life: Cathy Moughton, PSPA helpline care navigator

By CONTRIBUTOR

24 May 2023

Charity & advocacy

GACI Global: circulating hope for families affected by a rare genetic disease that primarily affects the circulatory system

By CONTRIBUTOR

17 May 2023

Patient voice

Generalised arterial calcification of infancy (GACI): Ruben’s story

By CONTRIBUTOR

17 May 2023

RARE News

The Muscle Help Foundation launches 20th anniversary celebrations

By admin

16 May 2023

RARE News

Global Genes announces partnership with CureJM Foundation to expand support in rare disease community for mental health-related challenges

By admin

16 May 2023

RARE News

The Twin Run – supporting high-risk multiple birth parents and twin research

By admin

12 May 2023

Turning the tide for rare disease

Changing the landscape for the differently-abled community one smile at a time. Dr Sai Kaustuv is our RARE Inspiration

By CONTRIBUTOR

10 May 2023

RARE News

CureDuchenne partners with PicnicHealth to advance research and simplify patient experience by incorporating electronic health records into data-integrated biobank

By admin

5 May 2023

Industry Insights

COVID: Three years on—what has changed?

By CONTRIBUTOR

3 May 2023

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