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Charity & advocacy
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
Charity & advocacy
Global Commission progresses technology health pilots to accelerate time to diagnosis for children with a rare disease
By CONTRIBUTOR
29 June 2020
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