Metabolic Support

Metabolic Support is the umbrella patient organisation for people living with and affected by Inherited Metabolic Disorders (IMDs). We are a UK-based organisation with an international reach. There are approximately 40,000 people in the UK living with one of around 2000 IMDs. Globally an estimated 72,000 people are born with these conditions each year and 1.43 million people live with IMDs worldwide. IMDs make up almost 25% of all known rare diseases and have a broad range of symptoms, treatments and life expectancy so we represent a very diverse community.

A key focus for us is supporting our community to live well now – in addition to supporting future developments – through focused services co-produced with the community; individual support, building connections, and developing evidence-based insight. As the only patient organisation supporting everyone affected by IMDs, we provide trusted information, tailored resources and a vital sense of community. By empowering people with knowledge and advocacy, we help them live as well as possible with their condition. 

Our families come from across the globe, in 2025 we supported people living in over 70 countries. This year we have rebranded as ‘Metabolic Support’ to better reflect the work we do; most of our community are part of small-patient populations spread across the globe and we work to connect and empower them all. 

Metabolic Support are also leaders in the wider field of rare disease; since our inception in 1981, we have been at the forefront of rare disease community development. Progressive development is in our DNA; as founding members of EURORDIS, expanding newborn screening, accelerating the development of IMD treatments, and empowering our community through the Living Well Movement.