News and stories

The latest Action Plan to implement the UK Rare Diseases Framework in England is out today. Minister Ashley Dalton, Parliamentary Under Secretary of State for Health and Social Care, introduced the paper on Tuesday at the Rare Disease Day Westminster reception. As at last year’s event the minister praised Genetic Alliance UK and our members for the advice and support we have provided to this plan’s delivery. The minister also spent time before her speech meeting many of our members and people living with rare conditions.

NICE publishes first quality standard to improve care for people with rare conditions

Genetic Alliance UK and the SHCA have come together ahead of the General Election to develop a joint manifesto for people with rare conditions. While they are individually rare, collectively rare conditions are common – 1 in 17 people are affected, equating to 3.5 million in the UK alone.

Jazz is part of the SWAN UK community, SWAN stands for syndrome without a name, a condition so rare that it doesn't have a name. In this blog she talks about her having a son with an undiagnosed condition.

A rare condition is defined as one that affects fewer than one person in 2,000. But collectively, rare conditions are more common than you might imagine. 1 in 17 of the UK population will be affected at some point in their lives.

ITN Business partners with Genetic Alliance UK to produce news-style programme ‘Rare Conditions: The Stories Behind the Stats’

Scott, 32, and Jamie McCowan, 28, are brothers and live in Scotland. They both have Duchenne Muscular Dystrophy and they have both achieved incredible careers in the sport of boccia, travelling the world and competing at the Paralympic Games.

For Rare Disease Day, Nerve Tumours UK are raising awareness by focusing on stories that highlight the impact of NF (the group name for Neurofibromatosis Type 1, NF2-related-Schwannomatosis and Schwannomatosis) every day. They want to #MakeNFVisible. This is Liz's story.

For Rare Disease Day 2024 we want to raise £17,000 to support the 1 in 17 people in the UK who will be affected by a rare condition during their lifetime

Over 2 pregnancies, Jane lost 5 inches in height due to the rare condition, Pregnancy-and-Lactation Osteoporosis. It took years to diagnose and there wasn't much support until she found a group on Facebook. Read Jane's story below.

Helen is a SWAN UK Parent Rep for Nottingham, Oxfordshire and Berkshire. After 19 years her son was diagnosed with hypermobile Ehlers-Danlos syndrome.