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Support helpline: 01582 798911 other ways to get in contact

Family Contact Network

Chatting to someone who knows exactly how you’re feeling and understands the daily challenges that Rett syndrome presents can really help. With our Family Contact Network supporters you’re only a phone call away from another parent who you can talk to.

Our network is made up of parents who’ll provide a listening ear and friendly support. They can share their experiences, whether that’s about Rett syndrome in general or a specific area such as epilepsy, scoliosis or feeding difficulties.

All our network parents have completed appropriate safeguarding training and listening skills training. Rest assured that the calls are completely confidential, unless our they feel there is a safeguarding concern.

* If you’d like to talk to one of our Family  Contact Network supporters, we can put you in touch. Contact our Support Helpline on 01582 798911. Or email

We are always very pleased to hear from parents who would like to join  the Family Contact Network. If you would like to find out more about this role, please email



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