The DHSC have launched their fourth action plan, setting out how they will implement the UK Rare Diseases Framework.
Rare diseases, affecting fewer than one in 2,000 people, collectively impact over 3.5 million people in the UK. These conditions, while individually rare, are common when considered together. Examples include cystic fibrosis, Huntington’s disease, and muscular dystrophies, though many other rare diseases exist, some affecting only a handful of people worldwide.
The UK Rare Diseases Framework, alongside England’s action plans, aims to improve care for those with rare conditions. The framework’s four main priorities are: faster diagnosis, increased healthcare professional awareness, better care coordination, and improved access to specialized care, treatment, and drugs. These are supported by five key themes, including patient voice, research, and international collaboration, with an added focus on health equity in England.
The Department of Health and Social Care’s fourth Rare Diseases Action Plan tracks progress on previous initiatives and introduces new actions to address these priorities. These actions are developed collaboratively with NHS England and public sector health partners, aiming to enhance support and outcomes for those living with rare diseases.
You can read the plan here.
