RARE News

RARE News

DEBRA UK asks the British public to BE the difference for EB in 2024

By admin

19 March 2024

Industry Insights

Living well today: How do we make it happen for the rare diseases community?

By CONTRIBUTOR

13 March 2024

RARE News

Launching CamRARE’s ‘The Need for a RARE Patient Passport’ Report for Rare Disease Day

By admin

1 March 2024

RARE News

Coave Therapeutics Receives Grant from the ALS Association to Advance its CTx-TFEB Program as a Potential Treatment for All Forms of ALS

By admin

29 February 2024

RARE News

SMA Europe launches “Care for adults living with SMA in Europe: a benchmarking report.”

By admin

29 February 2024

Charity & advocacy

One in a million

By CONTRIBUTOR

28 February 2024

Patient voice

Raising a child with Hirschsprung’s disease

By CONTRIBUTOR

28 February 2024

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

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