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Finding out more…getting more involved (continued)
Q. How can I get to talk to other people who understand my condition?
A. You might want to contact and perhaps join a self help group. There are various sites which can help you contact a group in your area, the NHS Direct Online site will give details of self help groups for a huge range of conditions:
Self Help UK is a free searchable database of over 1000 self help organizations and support groups throughout the UK that offer information, advice, guidance and support to patients, their families and carers. The site is produced by emseven healthcare, specialists in health care applications on the Internet.
In Scotland, Health Scotland lists a wide range of websites offering health advice and support.
Q. What about self help groups for very rare conditions?
A. The first port of call should be Contact a Family. This is a UK charitable organization which helps to put families of children with rare conditions and syndromes in contact with one another.
The Genetic Education Center at the University of Kansas Medical Centers site provides details of organizations in the US and worldwide who offer support and information on genetic and rare conditions. It includes a section aimed specifically at children and teenagers.
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