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Turning the tide for rare disease
Turning the tide for rare disease
Dr Justin West’s mission to accelerate the discovery of a disease-modifying treatment for KCNT1-related epilepsy
By admin
10 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 admin
30 May 2022
Turning the tide for rare disease
The Vascular Birthmarks Foundation: revolutionising awareness levels, access to treatments and physician education
By admin
26 May 2022
Turning the tide for rare disease
The first step in advocacy is believing in the power of your own voice
By admin
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 admin
9 May 2022
Turning the tide for rare disease
The Big Sunflower Project
By admin
2 May 2022
Turning the tide for rare disease
A multi-centre registry for idiopathic pulmonary capillaritis
By admin
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 admin
20 April 2022
Turning the tide for rare disease
Rare Patient Voice: helping patients and caregivers share their voices
By admin
14 April 2022
Turning the tide for rare disease
The Akari Foundation – a light of hope for people with DMD in the Hispanic community
By admin
11 April 2022
Turning the tide for rare disease
Riding the wave of medical research to find a cure for Ellie
By admin
6 April 2022
Turning the tide for rare disease
Time for action
By admin
28 March 2022
Turning the tide for rare disease
The Global Genes Rare Disease Equity, Diversity and Inclusion Report: the glimmers of hope
By admin
23 March 2022
Turning the tide for rare disease
Libmeldy gene therapy offers a lifeline to children with leukodystrophy and gives hope to the rare disease community
By admin
23 March 2022
Turning the tide for rare disease
Turning the tide for adult polyglucosan body disease (APBD)
By admin
16 March 2022
Turning the tide for rare disease
The Global Genes Rare Disease Diversity, Equity and Inclusion Report: the challenges
By admin
16 March 2022
Turning the tide for rare disease
The healing power of storytelling
By admin
14 March 2022
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