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 in our closed Facebook group

Other UK sites with trusted health information:

NHS website
www.nhs.uk

Patient UK
www.patient.co.uk

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

Is there support?

SWAN UK

Tel: 0300 124 0441
Email: info@undiagnosed.org.uk
Website: undiagnosed.org.uk

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 December 2022.