Also known as: 13q Deletion syndrome

If your child is affected by a medical condition or disability 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.

To meet other parents see support groups below or meet other parents online in our closed Facebook group

Please see below for reliable medical information on Retinoblastoma produced by alternative providers.

NHS website

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?

Childhood Eye Cancer Trust

Tel: 020 7377 5578

The Trust is a Registered Charity in England and Wales No. 327493. It provides information and support for families and individuals affected by retinoblastoma. The Trust has support workers who are there for families attending retinoblastoma clinics for treatment, screening and beyond. It also offers regional meet-ups and linking. 

Group details last reviewed June 2023.

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