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.

Ahead of our RDD 2026 report launching tomorrow, we’re so glad to see The Guardian shining a spotlight on the experiences of people living with rare genetic conditions, and we’re thrilled that Emma and Ali, who so powerfully shared their stories at our recent Scottish parliamentary reception, are also featured.

Genetic Alliance UK welcomes the appointment of Sharon Hodgson MP as Parliamentary Under-Secretary of State in the Department for Health and Social Care. Under this portfolio, the Minister will be responsible for rare diseases.

After a phone call revealed his baby daughter had cystic fibrosis, Huw reflects on the shock, hope, and the urgent need for fairness in rare disease care.

After a decade of unanswered questions, Janet finally discovered she has Laryngeal mucous membrane plasmacytosis – a condition so rare she can no longer eat and survives entirely on intravenous nutrition. Through career changes, adapting daily life, and finding new passions, she’s built a life beyond her diagnosis. This is Janet's story.

This is Lucy's story which was written about her son who lives with 22Q11.21 Micro Duplication. The story was submitted as part of ‘More than you can imagine: an anthology of rare experiences‘, created for Rare Disease Day 2025.

This is Alan's short story which was submitted to ‘More than you can imagine: an anthology of rare experiences‘, created for Rare Disease Day 2025. It discusses experiences of living with Poland syndrome.

Jonathan's submission to 'More than you can imagine: an anthology of rare experiences', created for Rare Disease Day 2025

Written by Abigail Davison-Hoult. This story explores the desire to pigeonhole ourselves and one another to comply with societal rules, but also looks at the difficulties faced when trying to determine the correct category. There is the suggestion of prejudice whether intentional or assumed, particularly in the case of minority populations. Ultimately, the reader needs to use the information given to decide on their version of the outcome of this story.