Help shape the future of rare disease research regulation in the UK!
Rare Disease Research UK (RDR UK) and LifeArc Centre for Acceleration of Rare Disease Trials (ARDT) are working together to better understand the experiences and needs of the rare disease research community when navigating the UK regulatory pathways and frameworks.
We’re gathering insight from across the four UK nations (England, Wales, Scotland & Northern Ireland) to build a clearer picture of:
🔹Positive and negative experiences specific to rare disease research
🔹Challenges faced when navigating regulatory and governance processes for rare diseases
🔹Community needs and priorities for future improvements in rare diseases
This includes the full pathway from regulatory approval to NHS commissioning and adoption, and experience with different bodies across the UK.
Whether you’re a researcher, clinician, funder, patient advocate or work in health policy in rare disease – we want to hear from you!
Your feedback will help inform improvements that can speed up access to treatments and support innovation in rare disease care. Thank you for being part of the change!
