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Turning the tide for rare disease

Becker muscular dystrophy patients find hope in building a community

By CONTRIBUTOR
4 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

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

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

A day in the life

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

By CONTRIBUTOR
23 October 2024

Turning the tide for rare disease

Bringing light into the world: the father running over 200 miles for Angelman Syndrome

By CONTRIBUTOR
16 October 2024

A day in the life

A day in the life of a PSPA helpline manager

By CONTRIBUTOR
14 October 2024

Turning the tide for rare disease

Research into diagnostic tests celebrated at international conference

By CONTRIBUTOR
9 October 2024

RARE News

Dravet Syndrome UK awarded major funding boost to accelerate research into Dravet Syndrome

By CONTRIBUTOR
9 October 2024

Patient voice

Understanding palliative care

By CONTRIBUTOR
9 October 2024

Patient voice

What is pain?

By CONTRIBUTOR
9 October 2024

Charity & advocacy

Join the movement: championing care for rare musculoskeletal conditions

By CONTRIBUTOR
9 October 2024
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