Charity & advocacy

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

Charity & advocacy

Ableism can hurt your confidence. Learn to use your voice to regain your personal power!

By CONTRIBUTOR

19 April 2023

Charity & advocacy

An advocate’s fight across the finish line: learning to live with multiple rare conditions and the trauma of the Boston Marathon bombing

By CONTRIBUTOR

12 April 2023

Charity & advocacy

The incalculable costs of rare diseases for individuals, families and society

By CONTRIBUTOR

29 March 2023

Charity & advocacy

Teach RARE: a family’s rare disease journey continues by supporting caregivers with special education teaching and learning

By CONTRIBUTOR

15 March 2023

Charity & advocacy

“Are we there yet?” Designing communication initiatives based on community needs – the Comms Working Group at SMA Europe

By CONTRIBUTOR

15 March 2023

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