Charity & advocacy

Charity & advocacy

Supercharging advocacy in Latin America for Hirschsprung’s disease and anorectal malformation

By CONTRIBUTOR

31 May 2024

Charity & advocacy

Huntington’s disease (HD) was not part of my plans, but it sure has a plan for me

By CONTRIBUTOR

29 May 2024

Charity & advocacy

One in a million

By CONTRIBUTOR

28 February 2024

Charity & advocacy

300 million colours of Rare: three patients and caregivers share their rare disease stories

By CONTRIBUTOR

28 February 2024

Charity & advocacy

Glasgow Children’s Hospital Charity: flying the flag for rare disease families year round

By CONTRIBUTOR

27 February 2024

Charity & advocacy

Rare Disease Awareness Day Calendar

By CONTRIBUTOR

14 February 2024

Charity & advocacy

Davis Out of the Unknown: a family’s life with Koolen-de Vries Syndrome and their search for treatment

By CONTRIBUTOR

3 January 2024

Charity & advocacy

Thoughts into Action: What is quality of life as defined by people living with inherited metabolic disorders?

By CONTRIBUTOR

22 November 2023

Charity & advocacy

Shining a light on Smith-Magenis syndrome

By CONTRIBUTOR

15 November 2023

Charity & advocacy

Do you work for a compassionate employer?

By CONTRIBUTOR

18 October 2023

Charity & advocacy

A Rare Find: upcoming comedy short wants to create conversation around newborn screening

By CONTRIBUTOR

27 September 2023

Charity & advocacy

Mitochondrial disease awareness week: let’s move the needle towards effective treatments and cures

By CONTRIBUTOR

20 September 2023

Charity & advocacy

Creld1 Warriors—bringing the scientific and parent community together

By CONTRIBUTOR

2 August 2023

Charity & advocacy

Connie Montgomery’s late diagnosis with two rare diseases: factor VII deficiency and pemphigus vulgaris

By CONTRIBUTOR

19 July 2023

Charity & advocacy

Dee and Nadia’s journey with Kawasaki disease

By CONTRIBUTOR

21 June 2023

Charity & advocacy

Global Genes and Cure JM Foundation: expanding mental health support for the rare disease community

By CONTRIBUTOR

7 June 2023

Charity & advocacy

GACI Global: circulating hope for families affected by a rare genetic disease that primarily affects the circulatory system

By CONTRIBUTOR

17 May 2023

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