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

Medical

CATNAP® registry: collecting real-world data to enhance understanding of paediatric narcolepsy

By CONTRIBUTOR

17 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

Science & tech

The real-world evidence revolution: how better research can improve patients’ lives

By CONTRIBUTOR

27 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

Medical

Sanius Health’s mission to personalise care for people with sickle cell disease—using advanced wearable technology

By CONTRIBUTOR

29 September 2022

Charity & advocacy

Governing with Purpose: How to lead a brilliant board – a guide for charity trustees

By CONTRIBUTOR

29 September 2022

Science & tech

Merging the metaverse and the rare disease community: join the conversation

By CONTRIBUTOR

22 September 2022

Medical

The RAPSODI study: an online study to understand the association between the Gaucher-causing gene and Parkinson’s

By CONTRIBUTOR

14 September 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 stilettoes’: Tisha Foster’s unique approach to raising awareness of hidden disabilities

By CONTRIBUTOR

12 September 2022

Patient voice

Passing on a rare disease: a RARE mother’s journey from ‘blameless guilt’ to joy

By CONTRIBUTOR

5 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