RARE News

RARE News

Sickle Cell Disease Association of America teams with MedicAlert Foundation to improve emergency outcomes during sickle cell crises

By admin

28 June 2023

A day in the life

A day in the life: Josiah’s diagnosis with familial cold autoinflammatory syndrome

By CONTRIBUTOR

28 June 2023

RARE News

102,000 newborns could be saved every year if proper screening were in place – celebrating International Neonatal Screening Day

By admin

28 June 2023

RARE News

Rare Care Centre Australia impact report

By admin

26 June 2023

RARE News

Pioneering polar adventurer and charity CEO of The Muscle Help Foundation charity to be awarded MBE for services to people with muscular dystrophy

By admin

26 June 2023

RARE News

An important milestone for the Duchenne community

By admin

23 June 2023

Charity & advocacy

Dee and Nadia’s journey with Kawasaki disease

By CONTRIBUTOR

21 June 2023

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

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