Patient voice

Patient voice

“Having SDS shouldn’t hold you back, it shouldn’t define who you are.”

By CONTRIBUTOR

18 December 2024

Industry Insights

Looking backwards, looking forwards

By CONTRIBUTOR

11 December 2024

Turning the tide for rare disease

Bridging the gap: differing perceptions of generalised myasthenia disease burden

By CONTRIBUTOR

11 December 2024

Turning the tide for rare disease

Becker muscular dystrophy patients find hope in building a community

By CONTRIBUTOR

4 December 2024

RARE News

New study reveals severe lack of support for Dravet Syndrome carers

By admin

3 December 2024

Turning the tide for rare disease

flok, pioneering patient-led research for inherited metabolic disorders (IMD)

By CONTRIBUTOR

3 December 2024

Turning the tide for rare disease

Bridging the gap: health inequalities and rare diseases

By CONTRIBUTOR

29 November 2024

Turning the tide for rare disease

Rare disease—self-advocacy and getting needs met!

By CONTRIBUTOR

28 November 2024

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 admin

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

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