Charity & advocacy

Charity & advocacy

PTC Therapeutics’ 2020 STRIVE awards for Duchenne muscular dystrophy recognise four patient advocacy organisations

By CONTRIBUTOR

30 September 2020

Charity & advocacy

Scottish based liver charity PBC foundation celebrates success of its first global online event

By CONTRIBUTOR

29 September 2020

RARE News

International Ataxia Awareness Day

By admin

24 September 2020

Charity & advocacy

CMT Research Foundation fighting to shorten the time to diagnosis and put CMT on the radar of pharma

By CONTRIBUTOR

24 September 2020

RARE News

The yellow front door, the beach hut & those patch houseplants!

By admin

16 September 2020

RARE News

Bardet-Biedl Syndrome UK (BBS UK) publish booklet supporting children and young people with Bardet-Biedl Syndrome in learning environments, across the UK

By admin

10 September 2020

RARE News

Leading NIH expert on GNE myopathy joins the Neuromuscular Disease Foundation (NDF)

By admin

1 September 2020

Charity & advocacy

A race against time

By CONTRIBUTOR

18 August 2020

RARE News

Jeff D’Angelo: founder of CHAMP 1 research foundation tells his RARE story

By admin

11 August 2020

Charity & advocacy

The Albinism Fellowship UK and Ireland are proud to support a campaign to end discrimination within international blind sport

By CONTRIBUTOR

5 August 2020

Medical

Alan Finglas, founder of MSD Action Foundation and Saving Dylan, contemplates EU policy and the potential it has to open the gates for real change in the rare disease community

By CONTRIBUTOR

28 July 2020

Rare insights

Team reflections on working through a global pandemic

By admin

20 July 2020

Medical

Why the COVID-19 pandemic may be particularly challenging for families living with rare conditions

By CONTRIBUTOR

17 July 2020

Patient voice

Achalasia Action is shining a spotlight on a rare disease of the oesophagus: achalasia

By CONTRIBUTOR

15 July 2020

Medical

My reflections on COVID-19

By CONTRIBUTOR

10 July 2020

Charity & advocacy

“I Stay Home for RARE” financial assistance campaign launched by Living in the Light.

By CONTRIBUTOR

8 July 2020

Charity & advocacy

Kawasaki disease UK

By CONTRIBUTOR

1 July 2020

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