This conference will discuss the next steps for rare diseases policy in the UK, looking at priorities going forward for the Rare Diseases Framework, the role of genomics in improving diagnosis and care, and the future for research, treatment access, and system preparedness.
Taking place following the publication of the Rare Diseases Framework earlier this year, delegates will discuss the first year of its delivery, the impact of the pandemic, and the key priorities for delivering ambitions within the framework over the next year.
It will also be an opportunity to look at the impact o
There is a substantial need for continued research and renewed policy focus into rare diseases. As such, the report makes five recommendations. Implementing these recommendations will help to improve the lived experiences of rare disease patients:
Recommendation one: Review and refresh the UK Strategy for Rare Diseases before the end of 2020. The strategy has become obsolete as technologies, policies and systems have moved on. Its commitments urgently need updating to ensure rare disease patients receive high quality services, treatment and support regardless of where they live in the UK