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RARE News
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
RARE News
Survey launched for UK-based rare disease patient advocacy groups on gene therapy decision aids
By admin
30 April 2024
Sunday sessions
Goodness and mercy: my lupus journey
By CONTRIBUTOR
28 April 2024
RARE News
DEBRA UK partners with the Cancer Research UK Scotland Institute to tackle early-onset cancer in patients with RDEB
By admin
25 April 2024
RARE News
NCBRS Worldwide Foundation announces inaugural “UNITED AGAIN” Family Conference – UK 2024
By admin
23 April 2024
A day in the life
A day in the life: living with dyskeratosis congenita (DC)—Paula’s story
By CONTRIBUTOR
19 April 2024
Turning the tide for rare disease
Jenny Decker attempts to sail solo around the globe to raise awareness of Charcot-Marie-Tooth disease
By CONTRIBUTOR
15 April 2024
RARE News
DREAMS: a new Horizon Europe project brings hope to rare disease patients
By admin
12 April 2024
Industry Insights
As we enter a new financial year, how does the UK Budget affect the rare disease community?
By CONTRIBUTOR
10 April 2024
RARE News
Multidisciplinary expert panel explores the necessity to “shed light” on rare and undiagnosed diseases: an invitation to attend a live event at Harvard Medical School, in-person or virtually
By admin
10 April 2024
RARE News
AKU Society launches Global Patient Registry to drive research into ultra-rare disease alkaptonuria
By admin
10 April 2024
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