Turning the tide for rare disease

Turning the tide for rare disease

Ms Colorado America 2022: two-time aneurysm survivor and a champion for cardiovascular disease prevention

By CONTRIBUTOR

31 August 2022

Turning the tide for rare disease

Jeans for Genes: raising awareness and funds to help people living with life-altering genetic conditions

By CONTRIBUTOR

29 August 2022

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

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