Charity & advocacy

Charity & advocacy

For George: The MVA Society

By CONTRIBUTOR

20 November 2024

RARE caregiving

Challenges of caring for a rare disease patient—a discussion

By Becky Pender

20 November 2024

Turning the tide for rare disease

Access to spinal muscular atrophy (SMA) treatment in Denmark: a success story of how persistence can win in the end.

By CONTRIBUTOR

15 November 2024

Industry Insights

Real-world data in EAPs: makes sense for rare diseases

By CONTRIBUTOR

13 November 2024

RARE News

DEBRA partners with NHS England to better understand epidermolysis bullosa (EB)

By Becky Pender

11 November 2024

RARE News

HBA Support achieves registered charity status

By admin

7 November 2024

Patient voice

My journey with adrenocortical cancer: from diagnosis to advocacy

By CONTRIBUTOR

6 November 2024

Turning the tide for rare disease

The Acromegaly Community: An international haven for people living with acromegaly

By CONTRIBUTOR

1 November 2024

RARE News

DREAMS: a year of innovation and progress in the quest for neuromuscular disease therapies

By admin

31 October 2024

RARE News

Walk with WAPO through the Experiences of People Living with Acromegaly

By admin

30 October 2024

RARE News

MENA Congress for Rare Diseases 2025

By admin

29 October 2024

RARE News

CureDuchenne partners with Blizzard Entertainment and World of Warcraft for limited-time charity pet program

By admin

29 October 2024

RARE News

PRISMS Creates Awareness for Smith-Magenis Syndrome on Smith-Magenis Syndrome Awareness Day

By admin

28 October 2024

RARE News

Laura MacNeill named new CEO of CMT Research Foundation

By admin

23 October 2024

A day in the life

A Day in the Life: living with sickle cell anaemia-Naomi’s story

By CONTRIBUTOR

23 October 2024

RARE News

It’s CMT Awareness Month during October, although less than 10% of the UK population have heard of CMT (according to a survey)

By admin

22 October 2024

RARE News

Accessia Health opens financial assistance program For individuals with rare blood disorder myelodysplastic syndromes

By admin

21 October 2024

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