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Author:
CONTRIBUTOR
Charity & advocacy
Let’s Play Fair—Disability Charity Scope launches accessible play campaign which demands that every child has an equal right to play
By CONTRIBUTOR
3 June 2022
Turning the tide for rare disease
A mother’s mission to raise awareness of Bardet-Biedl syndrome and promote effective partnerships between carers and medical professionals
By CONTRIBUTOR
30 May 2022
Turning the tide for rare disease
The Vascular Birthmarks Foundation: revolutionising awareness levels, access to treatments and physician education
By CONTRIBUTOR
26 May 2022
Charity & advocacy
Rare Diseases Organization Nepal holds inaugural meeting to formalise its mission, vision, values and main objectives
By CONTRIBUTOR
23 May 2022
Turning the tide for rare disease
Saarah’s Foundation: a fitting legacy to Saarah Ahmed—daughter, sister, star student, aspiring neuroscientist, Miss Universe GB contestant and kEDS warrior
By CONTRIBUTOR
20 May 2022
Science & tech
Sure, you’ve heard about GNEM. But do you know about the Bulgarian variant?
By CONTRIBUTOR
19 May 2022
Turning the tide for rare disease
The first step in advocacy is believing in the power of your own voice
By CONTRIBUTOR
16 May 2022
Turning the tide for rare disease
Beat SCAD’s passionate and persistent quest for answers for the spontaneous coronary artery dissection community
By CONTRIBUTOR
9 May 2022
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
Patient voice
The rare and wonderful opportunity of parenting a child with a RARE condition
By CONTRIBUTOR
29 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
Turning the tide for rare disease
Riding the wave of medical research to find a cure for Ellie
By CONTRIBUTOR
6 April 2022
Patient voice
Redefine: Max Feinstein’s concept album inspired by his life with haemophilia
By CONTRIBUTOR
4 April 2022
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