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Cockayne syndrome
Is there support?
c/o Contact a Family
209-211 City Road
London
EC1V 1JN
Tel: 0151 639 9225 (7pm-9pm, answerphone available)
e-mail: amyandfriends@initiativefactory.org
Web: http://www.amyandfriends.org
Amy and Friends is a National Registered Charity No. 1119746 established in 2006. The group has close links with a US group and medical professionals at the Boston Children's Hospital. They work closely with geneticists in the UK, provide a newsletter and have held two retreats, which they hope to offer annually. The group are in touch with approximately 25 families.
Group details last updated August 2008.
Inheritance patterns and prenatal diagnosis
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makingcontact.org
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