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A support group for all . . .
The Wilson's Disease Support Group UK is an all volunteer organisation
which strives to promote the well-being of patients
with Wilson's Disease and their families and friends.
The organisation aims to provide informative articles
about the nature of the disease, articles written
by patients, families and friends about their experiences of the disease,
recent progress in
treatment and much more, by way of a biannual newsletter.
The organisation also aims to promote networking of WD patients and
their families by helping and encouraging them to correspond with each
other.
Finally, the organisation strives to generate a wider awareness of Wilson¹s
Disease and its diagnosis within the medical profession.
What the Wilson's Disease Support Group - UK Does
The organisation aims to provide patient support and aims to provide
and promote education and outreach.
Patient Support:
- Maintains a membership list which includes patients,
their families, their friends, and any other individuals
and organisations interested
in the disease
- Sends an annual newsletter containing information
about the disease
- Provides a network for written and phone communication
between affected individuals and their families.
Education and Outreach:
- Answers questions from the public about the disease
Provides relevant information for professionals to
heighten awareness of the disease and to educate
people about the disease.
- Offers advice on referral to doctors
and resources
for patients with Wilson's Disease
- Distributes pamphlets and other information
to genetics clinics and other professional groups
for distribution to patients and
their families
- Promotes public awareness of Wilson's Disease
through media coverage
- Co-operates with investigators to advance
research into Wilson's Disease.
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