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NIEMANN-PICK DISEASE GROUP (UK)Niemann-Pick Desase (NPD) constitutes a group of rare, inherited, metabolic
diseases which occur most frequently in children but can also affect adults.
The three most commonly recognised forms are: Types A, B and C. The
Niemann-Pick Disease Group (UK) is an international self-help support group
with charitable status. It is managed by a committee consisting mainly of
parents of affected children and other interested professionals. The Group also
covers Nevilles Disease, Sphyngomyelin Lipidosis, DAF Syndrome and Juvenile
Dystonic Lipidosis which are alternative names for NPD. Aims- To provide accurate, up-to-date information about Niemann-Pick Disease and
its management, to parents and professionals.
- To act as a support agency for families affected by NPD by collecting
information on such matters as education, insurance, care aids and other
practical matters.
- To share experiences and provide support for each other.
- To support the work of one clinical centre in the UK which would act as a
centre for NPD and a focus for research and information. This centre has been
established at the Willink Biochemical Genetics Unit, Royal Manchester
Children's Hospital.
- To support research into the various types of NPD wherever and however it
can.
Services- Giving and receiving emotional support.
- Providing assistance through a crisis.
- Sharing resources and ideas about such issues as doctors, clinics, benefits
and education.
- Providing each other with practical suggestions relating to the day-to-day
care of the children.
- Establishing enduring relationships with other parents of children with a
life-limiting condition.
Membership of the Group is £5.00 per year (correct May 1999). Members
receive a newsletter, Niemann-Pick News, three times a year.
Niemann-Pick Disease Group (UK)
Kingslaw House
East Brae
East Wemyss
Fife
KY1 4RS  01592 580672
 01592 580672
 http://www.nnpdf.org/npdg-uk
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