Subscribe Now

By entering these details you are signing up to receive our newsletter.

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 admin
22 May 2024

RARE News

DEBRA UK supports the Burma Skincare Initiative at the Chelsea Flower Show

By admin
21 May 2024

Science & tech

Precision in patient data: How genetic databases are helping to shape rare disease population studies

By admin
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 admin
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 admin
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 admin
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 admin
15 April 2024
Skip to content