Rare Syndromes - Contact a Family

If your child has been diagnosed with a rare syndrome or condition, there are a number of organisations that can give you information and support.

Having a child with a rare disorder can be a huge shock and can stir up many emotions as well as a desire to learn more about your child's condition. There are organisations who can put you in touch with families who have a child with the same condition, or with families of children with other rare conditions who may be having similar experiences to you.

Contact a Family

About us

Contact a Family gives support, advice and information to families of children with disabilities, whatever their condition or disability. The group believes that all families of children with disabilities should be empowered to live the lives they want to and to reach their full potential. Contact a Family is a registered charity and has over 30 years' experience of working with children and families. Although it is based in the UK, its services are all available online.

Our services

Contact a Family offers a wide range of information and support services including:

  • publications for families and professionals who work with children with disabilities - you can download free copies from the publications section of its website;
  • a comprehensive A-Z of information on conditions, including many rare syndromes and conditions, together with details of UK support groups for those conditions; and
  • a sister website MakingContact.org - this website lets the parents of children with disabilities, their friends or adults with disabilities themselves find and contact others affected by the same condition. The website's database of families includes a number of families from Ireland whose children ahve a range of rare disorders.

How to contact us

You can contact the group by post, phone, email or visiting its website at either its London or Belfast office: 

Contact a Family,
209-211 City Road,
EC1V, 1JN,

Telephone: +44 (0)20 7608 8700
Fax: +44 (0)20 7608 8701
Email: info@cafamily.org.uk
Website: www.cafamily.org.uk

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  • Informing Families Project, National Federation of Voluntary Bodies,  Oranmore Business Park,  Oranmore, Galway
  • Phone: +353 (091) 792316
  • Fax: +353 (091) 792317
  • Email: info@informingfamilies.ie
© 2022 Informing Families


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