RARE News

Pulitzer Prize-winning journalist Amy Dockser Marcus and Rebel Health author Susannah Fox to deliver keynotes at 12th annual RARE Advocacy Summit

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19 July 2023

RARE News

RARE Health Equity Forum seeks to put ideas into action

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12 July 2023

RARE News

Rare disease patient advocates gather in San Diego for a week of events to connect, learn, and empower

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7 July 2023

RARE News

New online course for medics launched today: exploring mental health and rare disease

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4 July 2023

RARE News

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

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28 June 2023

RARE News

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

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28 June 2023

RARE News

Rare Care Centre Australia impact report

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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

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26 June 2023

RARE News

An important milestone for the Duchenne community

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23 June 2023

RARE News

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

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17 June 2023

RARE News

Cure Mito Foundation launches resource on Leigh syndrome

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9 June 2023

RARE News

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

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5 June 2023

RARE News

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

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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

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25 May 2023

RARE News

The Muscle Help Foundation launches 20th anniversary celebrations

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16 May 2023

RARE News

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

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16 May 2023

RARE News

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

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12 May 2023