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RARE News
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
RARE News
New report: If Only You Knew
By admin
10 April 2024
RARE News
Nxera Pharma joins the World Orphan Drug Alliance
By admin
9 April 2024
RARE News
Eurordis to host 12th European Conference on Rare Diseases and Orphan Products (ECRD 2024)
By admin
4 April 2024
RARE News
Miami community comes together for CureDuchenne, raising nearly $2.5M since 2021
By admin
3 April 2024
RARE News
SMA Europe launches its 12th call for research
By admin
3 April 2024
RARE News
Sickle Cell Disease Association of America promotes Kevin Amado Jr.
By admin
27 March 2024
Letters
How can we get the patient heard by the regulators?
By CONTRIBUTOR
27 March 2024
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