Charity & advocacy

Charity & advocacy

300 million colours of Rare: three patients and caregivers share their rare disease stories

By CONTRIBUTOR

28 February 2024

Science & tech

Beyond development: Overcoming market access challenges for rare disease treatment

By CONTRIBUTOR

28 February 2024

RARE News

£1.5 million new fund launched to ‘Help the Heart’

By admin

27 February 2024

Charity & advocacy

Glasgow Children’s Hospital Charity: flying the flag for rare disease families year round

By CONTRIBUTOR

27 February 2024

RARE News

CureDuchenne hosts “Champions in Miami” event on March 9 to help find a cure for Duchenne muscular dystrophy

By admin

23 February 2024

Turning the tide for rare disease

Guiding Grayson: a family’s fight to advocate, educate and save their son, Grayson, from CLN3 Batten Disease

By CONTRIBUTOR

21 February 2024

RARE News

CMT Research Foundation partners to advance study of CMT type 1J by Dr Stephan Zuchner

By admin

21 February 2024

Science & tech

Dr Wendy Chung and Simons Searchlight: pioneering research into genes that cause rare neurodevelopmental disorders

By CONTRIBUTOR

21 February 2024

RARE News

Patients as Partners in Clinical Research Conference 2024

By admin

19 February 2024

A day in the life

A day in the life: living with Bardet-Biedl syndrome—Tessa’s story

By CONTRIBUTOR

16 February 2024

Charity & advocacy

Rare Disease Awareness Day Calendar

By CONTRIBUTOR

14 February 2024

A day in the life

Don’t let your condition define you! David’s journey with stiff person syndrome

By CONTRIBUTOR

14 February 2024

Industry Insights

Rare Disease Day 2024: Sheela Upadhyaya previews some of the events taking place across the world

By CONTRIBUTOR

14 February 2024

Industry Insights

The UK Rare Diseases Framework: Sheela Upadhyaya reflects on recent progress across the UK

By CONTRIBUTOR

12 February 2024

Patient voice

Love isn’t rare—Ken To’s journey with Huntington’s disease

By CONTRIBUTOR

11 February 2024

RARE News

MEF2C Foundation & MUSC launch program to develop MEF2C therapeutics

By admin

9 February 2024

Turning the tide for rare disease

Congenital muscular dystrophy: Kelly and Avery’s mission to challenge perceptions of disability

By CONTRIBUTOR

7 February 2024

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