The National Information
Centre for Metabolic Diseases

We are a national organisation working on behalf of children, young people and families affected by metabolic disease.

There are over 20,000 families affected by Metabolic Diseases in the UK over 39,000 throughout Europe and over 68,000 in the USA. Scientists throughout the world are very focused on discovering the causes of metabolic diseases, how they can be prevented and how current methods of diagnosis and treatment can be improved. The extremely vital work costs millions every year.

Our Vision is:

• To maintain and advance our position as the primary provider of Metabolic Disease specific information and support to children, young people, adults, families and professionals in the United Kingdom and to provide information and support to families worldwide, to fund educational and primary research programmes and to investigate treatments and medical services.

We do this by:

• Funding research and facilitating medical treatment
• Providing information, advice and support for families and professionals Supporting families through grants to help meet equipment and other costs
• Educating professionals and others about this group of diseases

In doing this we

• Affirm the right of families to access services of a consistently high quality
• Affirm families' right to information which is accurate, up to date and which they will understand, about their child's condition
• Complement the other services that exist
• Encourage partnership between GPs, hospital staff, other professionals involved in the care of children with inherited metabolic diseases and their parents
• Promote the allocation of resources to research which has the potential to identify, prevent and cure such disorders
• Include our users and reflect the findings of the latest relevant health and social research in planning our services

The demand for our services continues to grow. Many children who at one time would have been undiagnosed are now known to have been suffering from a metabolic disease. As medical science and knowledge advances, this trend is likely to continue - there will be more families needing our support, more children relying on us to help find cures. There will, too, be more hope - but only if we have the resources to match demand. We rely heavily on voluntary donations to fund our work. You can find out more about our achievements and how you can help us achieve even more elsewhere in this website.