Patient voice

Patient voice

A story of heartbreak and hope: Juju’s journey with CLN2 Batten disease

By CONTRIBUTOR

9 May 2022

Science & tech

Building a bridge between patient and pharma: the CMT story

By CONTRIBUTOR

9 May 2022

Turning the tide for rare disease

The Big Sunflower Project

By CONTRIBUTOR

2 May 2022

RARE News

National health charity CMTUK is to host annual conference on May 6th-7th

By admin

29 April 2022

Patient voice

The rare and wonderful opportunity of parenting a child with a RARE condition

By CONTRIBUTOR

29 April 2022

RARE News

Undiagnosed Day 2022

By admin

28 April 2022

Turning the tide for rare disease

A multi-centre registry for idiopathic pulmonary capillaritis

By CONTRIBUTOR

25 April 2022

Turning the tide for rare disease

Project Sebastian: a safe space for the rare disease community to talk, listen and connect

By CONTRIBUTOR

20 April 2022

Turning the tide for rare disease

The Akari Foundation – a light of hope for people with DMD in the Hispanic community

By CONTRIBUTOR

11 April 2022

RARE News

California mental health initiative to fight hidden sickle cell symptoms

By admin

8 April 2022

Turning the tide for rare disease

Riding the wave of medical research to find a cure for Ellie

By CONTRIBUTOR

6 April 2022

Rare insights

Medics4RareDiseases joins forces with Bionical Emas to launch new online training

By admin

5 April 2022

Patient voice

Redefine: Max Feinstein’s concept album inspired by his life with haemophilia

By CONTRIBUTOR

4 April 2022

Rare insights

National charity MPS Society encourages the public to spread awareness about rare genetic disease

By admin

4 April 2022

Medical

What can we learn from European rare disease policies to future-proof our health systems?

By CONTRIBUTOR

4 April 2022

RARE News

Global non-profit CureDuchenne announces futures national conference for the Duchenne muscular dystrophy community to be held May 27–29

By admin

1 April 2022

Patient voice

MNGIE: Verity Grainger’s mission to raise funds for a life-saving therapy

By CONTRIBUTOR

30 March 2022

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