Who are 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.
What support do we offer?
We are here to support everyone affected by inherited metabolic disorders. From practical guidance and peer connection to advocacy and national campaigning, our work is shaped by the real experiences of our community and designed to make a meaningful difference.
Below is an overview of the key areas of work through which we deliver this support:
Individual Support
We provide free, confidential and impartial emotional and practical support for people affected by IMDs.
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Monday to Friday helpline and email support, offering personalised guidance at your pace
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Long-term and complex casework support, including advocacy for those with additional needs
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Clear, lay-friendly information and practical toolkits to support daily life with an IMD
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Guidance on care pathways, referrals and treatment options
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Collaboration with IMD specialists and clinics to ensure accurate information and joined-up support
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Signposting to disorder-specific organisations and trusted services where appropriate
Building Communities
We bring people together to reduce isolation, share experiences and build lasting connections.
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Safe, moderated online communities that foster mutual understanding
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Facilitated peer support and specialist community programmes
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Opportunities for co-production and shared decision-making, including through our Metabolic Advisory Council
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Inclusive, accessible events connecting patients, families, professionals and partner organisations
Insight & Advocacy
We turn lived experience into meaningful change.
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Gathering and analysing community insights through surveys, interviews and focus groups
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Data-led advocacy to influence services, policy and decision-making
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Representation of the patient voice in health technology assessments and regulatory processes
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Sharing evidence, expertise and publications across the rare disease community
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Contributing to national and international discussions on IMDs
Influencing Change
We work to shape policy, systems and services so they better meet the needs of our community.
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Delivering ambitious, data-driven campaigns with measurable goals
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Responding to UK and international consultations on behalf of our community
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Providing accessible education and resources, including our Research Ready Hub
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Promoting equitable access to early diagnosis, care and treatment
Want to learn more?
Check out our strategy for 2026, below:
