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Author:
CONTRIBUTOR
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
Charity & advocacy
A race against time
By CONTRIBUTOR
18 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
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
Patient voice
National CMV Foundation – Amanda’s story
By CONTRIBUTOR
24 June 2020
Charity & advocacy
Nystagmus awareness day – 20 June 2020
By CONTRIBUTOR
17 June 2020
Medical
Danny’s Dose changing rules and saving lives
By CONTRIBUTOR
12 June 2020
Charity & advocacy
Welcome new boost for mums and dads of young children with albinism
By CONTRIBUTOR
11 June 2020
Charity & advocacy
Local charity thanks the north-east for the gift of time
By CONTRIBUTOR
5 June 2020
Charity & advocacy
My Little Lockdown Life created by Kate Read & Rebecca Atkinson
By CONTRIBUTOR
12 May 2020
Patient voice
EB World Congress—building on momentum and strength in numbers for epidermolysis bullosa
By CONTRIBUTOR
27 April 2020
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