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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:
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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.
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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.
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