Charity & advocacy

Charity & advocacy

Creld1 Warriors—bringing the scientific and parent community together

By CONTRIBUTOR

2 August 2023

A day in the life

A day in the life: graduation day for Raymond Huml’s son, Jon

By CONTRIBUTOR

25 July 2023

RARE News

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

By admin

19 July 2023

Charity & advocacy

Connie Montgomery’s late diagnosis with two rare diseases: factor VII deficiency and pemphigus vulgaris

By CONTRIBUTOR

19 July 2023

RARE News

RARE Health Equity Forum seeks to put ideas into action

By admin

12 July 2023

Industry Insights

The ABPI Code Partnership events: a step towards better partnerships?

By CONTRIBUTOR

12 July 2023

RARE News

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

By admin

7 July 2023

Science & tech

LifeArc announces investment of more than £100 million into rare disease research by 2030

By CONTRIBUTOR

6 July 2023

RARE caregiving

The barista and the quiltmaker: life lessons from strangers

By CONTRIBUTOR

5 July 2023

RARE News

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

By admin

4 July 2023

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

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