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SWAN -Syndromes without a name / undiagnosed disabled children

(2 Posts)
onestressedmum Mon 27-Aug-12 19:52:29

Hi Lauren, my dd has a diagnosed genetic condition but apparently its rare and has no name. Could I still join Swan?

SWANUK Thu 02-Jun-11 10:52:53

Hi, my name is Lauren and I coordinate a support project for parents who have children who are disabled but the cause is unknown - many of these children may be affected by issues such as growth / feeding problems, poor mobility, vision and hearing problems, epilepsy, speech and behavioural issues. If you have a disabled chilld with an undiganosed genetic condition please get in touch - we can offer information and support and put you in contact with other families so you don't feel so alone. come check out our blog where you can read other families stories and get details of our facebook group etc. www.swanuk.wordpress.com or drop me a line SWAN@geneticalliance.org.uk.

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