Driving change through England’s Rare Diseases Action Plans | LATSS 2026

Speaker: Kath Bainbridge (Office for Life Sciences) Synopsis: The fifth England Rare Diseases Action Plan was published on 27 February 2026. In this action plan we recognise rare diseases as a health inequality and introduce a new action to address this. The action plan reports on progress across the four priorities of the framework. Highlights include: MHRA’s commitments to major reform in regulation of rare therapies NICE’s publication of a new quality standard for rare diseases the development of a new NHS framework for individualised genetic therapies new funding for 2 pilot centres for people with undiagnosed rare conditions This talk will reflect on progress over the last five years and what should follow when the Framework expires in January 2027. This talk was recorded at the LifeArc Translational Science Summit 2026. ------------------------------------- LifeArc is a self-funded medical research organisation with one clear purpose – transforming the lives of people living with rare diseases and drug-resistant infections. We aim to deliver this by conducting and funding pioneering research, and working with partners to accelerate the translation of scientific breakthroughs into new tests and treatments. Our vision is a world where people living with rare diseases and drug-resistant infections can access effective, life-changing treatments faster. Find out more at lifearc.org