Charity & advocacy

Charity & advocacy

‘Hadid and I’ (and me!)

By Becky Pender, RARE Revolution

2 July 2025

Charity & advocacy

A milestone moment: The CPA Research Foundation hosts its first in-person retreat

By admin

26 June 2025

Charity & advocacy

A mother’s journey to change the medical landscape for son’s rare disease

By admin

18 June 2025

Charity & advocacy

Fighting for Jackson: A mother’s journey to empower families living with Angelman syndrome

By admin

13 June 2025

Charity & advocacy

The rare disease foundation journey

By admin

11 June 2025

Charity & advocacy

Building a global patient registry for a rare disease: The story of the INPDR

By admin

2 June 2025

Charity & advocacy

NF1 One degree of separation campaign: Interactive body map

By admin

15 May 2025

Charity & advocacy

Celebrating the incredible work of nurses for International Nurses Day

By CONTRIBUTOR

12 May 2025

Charity & advocacy

The heart of PPA2: building a global community of hope and advocacy

By CONTRIBUTOR

7 April 2025

Charity & advocacy

Venture philanthropy in rare disease: lessons from the frontlines

By CONTRIBUTOR

2 April 2025

Charity & advocacy

“Lil’ Brave One” from Serbia: Empowering scientific and patient networks in the field of rare neurotransmitter disorders

By CONTRIBUTOR

5 March 2025

Charity & advocacy

Immunocompromised Association kicks off 2025 with safety and fun, with its inaugural virtual New Year’s Eve ball drop+

By admin

14 February 2025

Charity & advocacy

For George: The MVA Society

By CONTRIBUTOR

20 November 2024

Charity & advocacy

NF1 breast cancer awareness campaign: Andrea’s story

By Emma Bishop, RARE Revolution

15 October 2024

Charity & advocacy

NF1 breast cancer awareness campaign: Leading NF1 expert Professor Gareth Evans calls for earlier screening

By Emma Bishop, RARE Revolution

15 October 2024

Charity & advocacy

NF1 breast cancer awareness campaign: Caitriona Plunkett empowers young women with NF1 to prioritise breast health

By Emma Bishop, RARE Revolution

15 October 2024

Charity & advocacy

NF1 breast cancer awareness campaign: Sharon’s story

By Emma Bishop, RARE Revolution

15 October 2024

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