Metabolic Support is a charity registered in England and Wales (1089588) in Scotland (SCO44634) and a Company Limited by Guarantee (04267454).
Our Next Chapter: Metabolic Support Our history Our organisation was founded in the UK after Jennifer Greene was born in 1978 with the rare inherited metabolic disorder (IMD), Cystinosis. Finding little information or support for families affected by metabolic conditions, her parents, Peter and Lesley Greene, established the charity in 1981, originally named the Research Trust for Metabolic Diseases in Children (RTMDC), to provide support, raise awareness and drive research for inherited metabolic disorders. We have always been a small organisation with big impact; our founders were instrumental in the establishment of EURORDIS, the largest patient-driven alliance of rare disease patient organisations in Europe and helped put rare disease more firmly on the radar of the UK healthcare system. We have over 45 years of history supporting individuals and families affected by inherited metabolic disorders and have grown from a small, family-driven initiative into a nationally and internationally recognised rare disease charity. Over the years, we have expanded our services to support people living with hundreds of rare metabolic conditions worldwide but retained our close connections to our community. We developed core services such as advice and support, building communities, peer support, educational resources and advocacy initiatives, alongside partnerships and policy engagement that have strengthened the voice of the rare disease community. Personal stories from individuals and families are central in driving our work and our impact and we have always been an authentically patient-centric organisation whilst striving for growth. Our name and remit have historically focused on our relevance and strength as a UKbased organisation supporting UK communities and have for the past seven years been called Metabolic Support UK.
The next steps We have evolved and now offer diverse services, support and advocacy across our impressive range of work. Over the course of a week, we can be found: responding to government policy consultations, hosting community quiz, advocating for social care support, providing sector-leading consultancy with commercial partners and helping connect communities across the globe. Building on this rich, community-built legacy, our work and reach have grown beyond the UK. As our community has expanded internationally, it is important that our name reflects the global nature of the support we provide and research we do, ensuring our doors are open for the 1.43 million people living with IMDs worldwide. That is why this Rare Disease Day 2026 we are proud to share we are changing our name from Metabolic Support UK to Metabolic Support. This is an evidence-driven evolution designed to better reflect what we already do and to help more people find and reach us.