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Undiagnosed Children

If your child is undiagnosed we can help. Call our freephone helpline on 0808 808 3555 to get information, support and advice. You can also browse our range of parent guides on aspects of caring for a disabled child in our resource library, or take a look at our new section 'Is your child without a diagnosis?'

To meet other parents see support groups below or meet other parents online at

Other UK sites with trusted health information:

NHS Choices

Patient UK

Although alternative links have been selected with great care, Contact a Family cannot accept responsibility for any inaccuracies or errors. Alternative information providers comply with the Information Standard and give details of their quality control procedures on their website, which includes review of information by a qualified medical professional.

Is there support?

Tel: 020 7831 0883
Email: via website

SWAN UK (Syndromes Without A Name) is an initiative run by the charity Genetic Alliance UK to provide information and support to families of children with undiagnosed genetic conditions. It offers an online forum, family fun days and local meet ups, and works with healthcare and other professionals to highlight the challenges faced by families of children with undiagnosed genetic conditions.

Group details last updated January 2017.

Talk to other families about your child's condition

Visit our online Undiagnosed Children group

Visit our online advice and support or read all about diagnosis.

You can also call us if you need information or advice on any aspect of caring for a disabled child. Monday to Friday, 9.30am to 5pm.

0808 808 3555 or