The 3.5 million people living with a rare condition in the UK experience profound isolation, fear and uncertainty, a new artistic movement to mark Rare Disease Day has revealed. The campaign, ‘More than you can imagine: an anthology of rare experiences’, urges the UK’s governments to renew the UK Rare Diseases Framework beyond 2025, setting new ambitions and capitalising on innovation. Genetic Alliance UK, an alliance of over 230 charities and support groups, is spearheading the new campaign as the official UK organiser of international Rare Disease Day.

People living with a rare condition experience significant feelings of isolation, fear and uncertainty according to a new collection of poems, paintings and stories published by Genetic Alliance UK, an alliance of over 230 charities and support groups, to mark Rare Disease Day. Highlighting the profound impact of rare conditions on day-to-day life, contributions to the creative anthology emphasised the hidden burden of physical and mental pain, the constant fear of the unknown, and importance of empowerment and community. Nick Meade, Director of Policy at Genetic Alliance UK, said:

“The Anthology is a unique and powerful collection of experiences from the patient community that demonstrates the emotional impact of having a rare condition. Through each of the heartfelt contributions we get a glimpse of the isolation, fear and hope that over 3.5 million people living with a rare condition, and their families, experience every day. It is a timely reminder that the government and the NHS must continue to focus on delivering for the rare disease community. That is why, today, we are calling for the UK’s governments to commit to renewing the UK Rare Diseases Framework in 2026 and beyond.”

Published as part of a brand new campaign, ‘More than you can imagine: an anthology of rare experiences’ brings to life the realities of living with a rare condition. The anthology contains over 60 submissions from individuals and support organisations across mediums such as poetry, music, photography and art. Alongside themes of isolation,

confusion and fear, the pieces explore empowerment and the importance of community. The anthology demonstrates the breadth of urgent unmet needs and common challenges, including diagnostic delays, lack of understanding from healthcare professionals, and limitations in accessing treatment.

Together with the anthology, Genetic Alliance UK have released a new policy report as part of the campaign calling for the UK’s governments to commit to renewing the UK Rare Diseases Framework, which is due to expire at the end of 2025. The campaign will be launched at several Parliamentary events across the UK around Rare Disease Day, where attendees will hear from Government Ministers, people living with rare conditions and other key voices in the rare community.

Peter Dowd MP, MP for Bootle and Chair of the All-Party Parliamentary Group on Genetic, Rare and Undiagnosed Conditions, said:

“I have been encouraged by the progress made in supporting people living with rare conditions since I joined the England Rare Diseases Framework Delivery Group back in 2021. Positive shifts towards improved access to treatments and wider awareness of rare conditions among healthcare professionals are a direct result of the Framework, but there is more work to be done. Many people with rare conditions still face a diagnostic odyssey, as well as a range of significant challenges highlighted by the anthology. There are a number national exemplars where dedicated multidisciplinary specialist clinical services support patients with rare and ultra rare disorders, as well as comprehensive care co-ordination with local teams. It is vital that we build on the success of the last five years by renewing the Framework in 2026.”

Rare conditions affect 3.5 million in the UK (approximately 436,000 in Scotland; 180,000 in Wales; 110,000 in Northern Ireland). People with rare conditions face a diagnostic odyssey, fragmented care, difficulty accessing treatment, and challenges with employment, education and local government support. Health professionals are finding ways to work together to bridge gaps despite barriers and limited opportunities for

collaboration and coordination. They all face significant systemic challenges which should be addressed on a national level through a renewed Framework.

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About Genetic Alliance UK

Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK, representing over 230 charities and support groups. It advocates for fast and accurate diagnosis, good quality care and access to the best treatments. It actively supports progress in research and engages with decision makers and the public about the challenges faced by the rare conditions community.

About Rare Disease Day

Rare Disease Day takes place annually on the rarest day of the year, 29 February, or 28 February on non-leap years. Rare Disease Day aims to raise awareness and drive change to improve the lives of the 3.5 million people living with rare conditions in the UK, their families and carers – and hundreds of millions more worldwide.

About the Rare Disease Day Parliamentary Receptions

Parliamentary receptions at Westminster, Holyrood and the Senedd will launch the ‘More than you can imagine’ campaign. The receptions are sponsored by: Peter Dowd, MP for Bootle, in Westminster; John Griffiths MS for Newport East, in the Senedd; and Bob Doris MSP for Glasgow Maryhill and Springburn, in Holyrood. You can learn more by visiting: https://geneticalliance.org.uk/news/rddreceptions/

About the UK Rare Diseases Framework

Now in its final year, the 2021 UK Rare Disease Framework aims to ensure that the lives of people living with rare conditions continue to improve. It drove significant improvements for patients, including: a UK Rare Disease Research Platform; rare conditions information hubs in Scotland and Northern Ireland; and pilot SWAN clinics in Wales. Extending the Framework alongside exciting new Government pledges for technological innovation would create new opportunities to improve outcomes and reduce inequalities through developing AI-driven diagnostics, digital care support, and cell and gene therapies.

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