Turning the tide for rare disease

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 rpender

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 rpender

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 rpender

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 rpender

20 July 2022

Turning the tide for rare disease

The Disability Policy Centre: putting accessibility and disability at the heart of legislation

By rpender

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 rpender

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 rpender

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 rpender

30 May 2022

Turning the tide for rare disease

The Vascular Birthmarks Foundation: revolutionising awareness levels, access to treatments and physician education

By rpender

26 May 2022

Editor's picks

Saarah’s Foundation: a fitting legacy to Saarah Ahmed—daughter, sister, star student, aspiring neuroscientist, Miss Universe GB contestant and kEDS warrior

By rpender

20 May 2022

Turning the tide for rare disease

The first step in advocacy is believing in the power of your own voice

By rpender

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 rpender

9 May 2022

Turning the tide for rare disease

The Big Sunflower Project

By rpender

2 May 2022

Turning the tide for rare disease

A multi-centre registry for idiopathic pulmonary capillaritis

By rpender

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 rpender

20 April 2022

Turning the tide for rare disease

Rare Patient Voice: helping patients and caregivers share their voices

By rpender

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 rpender

11 April 2022

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