Turning the tide for rare disease

Turning the tide for rare disease

A celebration of 25 years in advocacy: Tanya Collin-Histed, CEO of the International Gaucher Alliance

By CONTRIBUTOR

18 November 2022

Turning the tide for rare disease

Finding a cure nobody else is looking for: why Geri and Zach shoot for the moon

By CONTRIBUTOR

31 October 2022

Turning the tide for rare disease

What I learned raising a son with haemophilia: Stormy’s story

By CONTRIBUTOR

12 October 2022

Turning the tide for rare disease

CMTC-OVM: improving the lives of people with blood vessel abnormalities (vascular malformations)

By CONTRIBUTOR

3 October 2022

Turning the tide for rare disease

Being a strong father does not mean staying silent in times of trauma

By CONTRIBUTOR

14 September 2022

Turning the tide for rare disease

A ‘bullhorn in stilettos’: Tisha Foster’s unique approach to raising awareness of hidden disabilities

By CONTRIBUTOR

12 September 2022

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

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