A long list of candidate metrics for the 36 Actions linked to the four Priority Areas of the UK Rare Diseases Framework clinical trials

An online consensus-building study to agree on key policy measures for assessing whether the England Rare Diseases Action Plans (developed by the Department of Health and Social Care) are effective

This study asks people with rare diseases and healthcare experts in England to agree on the best ways to check if new plans to improve rare disease care are working well. It's an online survey aiming to make care better for everyone.