The Guardian shines a spotlight on the experiences of people living with rare genetic conditions
Ahead of our RDD 2026 report launching tomorrow, we’re so glad to see The Guardian publishing a story that shines 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.
In the UK, 1 in 17 people will be affected by a rare condition in their lifetime, yet healthcare systems are simply not designed with them in mind. Our new report, which we will be launching at our Westminster reception tomorrow, draws on community survey insights to set out what truly equitable care must look like. We’re calling on UK governments to take five bold steps:
- Deliver a UK-wide map of all 7,000 rare conditions through funded registries
- Close the evidence gap through fair and balanced research investment
- Mandate system-wide accountability to stress-test policies against rare conditions
- Embed rare conditions into mainstream healthcare delivery
- Commit to a bold successor to the UK Rare Diseases Framework
A fairer healthcare system is possible if we take urgent action now.
Please find out more on our Rare Disease Day 2026 web page.