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Turning the tide for rare disease
Turning the tide for rare disease
Breast implant illness: a patient’s experiences and her mission to raise awareness and improve care
By CONTRIBUTOR
19 August 2022
Turning the tide for rare disease
My baby’s new prognosis: ‘She will not die’… but what will her life be like and how should I live mine?
By CONTRIBUTOR
8 August 2022
Turning the tide for rare disease
Living with HOD, a rare degenerative neurological condition, and fighting for answers for the community: “And you may ask yourself, ‘Well… how did I get here?’”
By CONTRIBUTOR
1 August 2022
Turning the tide for rare disease
Child Youth Care Zimbabwe: improving the lives of Zimbabwean RARE families—one step at a time
By CONTRIBUTOR
29 July 2022
Turning the tide for rare disease
The CDCN’s ROADMAP project – supporting the pivotal role of rare disease non-profit organisations in accelerating drug repurposing
By CONTRIBUTOR
20 July 2022
Turning the tide for rare disease
The Disability Policy Centre: putting accessibility and disability at the heart of legislation
By CONTRIBUTOR
8 July 2022
Turning the tide for rare disease
The housing crisis: the unequal impact on the disabled community and the urgent need to listen to its voice
By CONTRIBUTOR
17 June 2022
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 CONTRIBUTOR
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 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
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
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
Turning the tide for rare disease
The Big Sunflower Project
By CONTRIBUTOR
2 May 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
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