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Author:
CONTRIBUTOR
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
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
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