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This section of the website is all about the genetics of retinoblastoma (Rb).  The information contained here is designed to be quite general.  If you want more detailed information which is tailored to you as an individual, ask your GP to refer you to a local geneticist or one of the two geneticists who work as part of the retinoblastoma teams in the UK.

They can be contacted through the retinoblastoma treatment centres, websites below.

The information about genetics on our website was written by Megan Pritchard and reviewed by Dr Elisabeth Rosser and Dr Gerald Draper.


We are members of Genetic Alliance UK. If you would like to find out more about the work they do please visit their website:

The Genetic Alliance UK has some useful leaflets designed for people who are seeing or who will be seeing a geneticist. You can find these publications on their website.


The Retinoblastoma Genetics Screening Unit at Bart’s and the London NHS Trust has a website. This website has information about the type of testing they do. It also includes detailed information about genetics and a useful glossary of terms. This is a website that you, your GP, local genetic counsellor and ophthalmologist may find useful.


About genetics

Click here for an introduction to genetics and the Rb gene.

Genetic testing

How genetic testing can be useful and what tests can be done.

Genetic counselling

Click here to find out how genetic counselling can help you understand how retinoblastoma has affected you as an individual.

Planning a baby

An article on genetic counselling for anyone who has been affected by retinoblastoma and is planning to have a baby.

Screening your child

Find out about screening children for retinoblastoma and when it is recommended.

Second primary tumours

Information on possible long-term effects of retinoblastoma.

My Story

Moving accounts from relatives and individuals who have been affected by retinoblastoma, explaining how they coped and the effects Rb has had on their lives.