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Author:
CONTRIBUTOR
Turning the tide for rare disease
Bridging the gap: differing perceptions of generalised myasthenia disease burden
By CONTRIBUTOR
11 December 2024
Reviews
Here’s to baseball, hustlers and believing
By CONTRIBUTOR
9 December 2024
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
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