Charity & advocacy

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 ebishop

15 October 2024

Charity & advocacy

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

By ebishop

15 October 2024

Charity & advocacy

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

By ebishop

15 October 2024

Charity & advocacy

NF1 breast cancer awareness campaign: Sharon’s story

By ebishop

15 October 2024

Charity & advocacy

NF1 breast cancer awareness campaign: Jodie’s story

By ebishop

15 October 2024

Charity & advocacy

Join the movement: championing care for rare musculoskeletal conditions

By CONTRIBUTOR

9 October 2024

Charity & advocacy

Haemochromatosis UK helps thousands with life-threatening genetic condition to be diagnosed through postal health kits

By CONTRIBUTOR

18 September 2024

Charity & advocacy

Alex TLC Monthly Research Summaries

By CONTRIBUTOR

12 September 2024

Charity & advocacy

Hope on the horizon: celebrating two years of Hereditary Brain Aneurysm Support and a bright future ahead

By CONTRIBUTOR

10 September 2024

Charity & advocacy

SMA Europe unites international voices in the new documentary ‘One Community. Shared Dreams’

By CONTRIBUTOR

31 August 2024

Charity & advocacy

Bridging gaps in care: How independent charitable patient assistance organisations support underserved populations

By CONTRIBUTOR

10 July 2024

Charity & advocacy

A day in the life: Being diagnosed with Fanconi anaemia as a child and as an adult—what are the differences?

By CONTRIBUTOR

18 June 2024

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