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Charity & advocacy
Charity & advocacy
Huntington’s disease (HD) was not part of my plans, but it sure has a plan for me
By CONTRIBUTOR
29 May 2024
RARE News
Families fight for rare epilepsy breakthrough and find it through a unique collaboration
By admin
28 May 2024
RARE News
Pop-up hospital gives chronically ill kids a summer camp
By admin
24 May 2024
RARE News
SMA Europe launches “real-life stories” to show how access to treatment and care impacts people living with spinal muscular atrophy
By admin
22 May 2024
RARE News
The Oxford-Harrington Rare Disease Centre announces newly funded grant award programmes to develop new therapies for Friedreich’s ataxia
By admin
22 May 2024
Turning the tide for rare disease
A rare dad’s journey: Inspiring change for the rare disease community in Rwanda
By CONTRIBUTOR
22 May 2024
RARE News
DEBRA UK supports the Burma Skincare Initiative at the Chelsea Flower Show
By admin
21 May 2024
Patient voice
How CLN2 Batten disease changed our life: “A Mother’s Love”
By CONTRIBUTOR
16 May 2024
Industry Insights
What are the next steps for rare disease innovation in the United Kingdom?
By CONTRIBUTOR
15 May 2024
RARE News
Global nonprofit CureDuchenne to host FUTURES National Conference for the Duchenne and Becker muscular dystrophy community (May 23-26, Orlando, Florida)
By admin
14 May 2024
RARE News
Happy Heart Week: raising awareness of Barth syndrome—over a decade of hope and support
By admin
9 May 2024
Science & tech
Precision in patient data: How genetic databases are helping to shape rare disease population studies
By CONTRIBUTOR
8 May 2024
RARE News
The Jackson Laboratory receives $8 million in federal funding to expand research capacity in rare diseases
By admin
6 May 2024
RARE News
PTLS HOPE Research Foundation: A new nonprofit focused on advancing research and raising awareness for Potocki Lupski syndrome
By admin
3 May 2024
RARE News
Meeting the needs of the Smith-Magenis syndrome community: PRISMS presents a guidebook with strategies and recommendations
By admin
2 May 2024
RARE News
Neurocrine Biosciences launches WHAT THE C@H?! educational initiative to support congenital adrenal hyperplasia community
By admin
1 May 2024
A day in the life
If you’re not dancing, something is wrong…
By CONTRIBUTOR
1 May 2024
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