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Comment:
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Syndromes Without A Name (SWAN) is a registered charity for families of children with undiagnosed conditions. It's aims are primariliy to provide support for each other and secondly to raise public awareness of these children. The group has members in New Zealand, USA, Canada, Australia and throughout the UK. Members keep in touch through Newsletter, exchanges stories and experiences. Although it is estimated that nearly one third of children with special needs fit the undiagnosed category most people do not know that these children exist and the parents feel isolated and frustrated.
They are developing a database to help link families more effectively. They hope it will also be of use in medical research into these conditions. Dependent on funding, they have been asked to make this an international database. There is a regular newsletter entitled Sygnet.
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