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Adults after Rb

Beyond Rb meet up in Cambridge

When the CHECT team first sat down to consider the new website design one of the key areas we were adamant about creating was a section dedicated to adults who have been affected by retinoblastoma (Rb).

For some the effects of Rb sadly do not end in childhood but stay with them for the rest of their lives. Our new section hopes to provide additional support for adults after Rb, helping them access vital information on genetics, starting a family and other health concerns.

We discuss what genetic counselling is; what people may like to know if they are thinking of having a child, plus we also have some information about why children who have an increased risk of developing retinoblastoma are being screened.

We have also tried to cover tricky issues concerning second primary cancers and staying safe in relation to this, hopefully helping you to access appropriate health care services more easily should you require them in the future.  You can just give your health professional a link to the appropriate pages.

Adults after Rb also covers information on services we provide.  We run a regular ‘Meet-up’ group.  Social meet-ups in the past have included a picnic, punting and local pub in Cambridge; a get together in Manchester and a sailing day in Southampton.

We have also updated our ‘My Story’ section with additional accounts from adults affected by Rb as a child. We always welcome new accounts from members so if you would like to contribute, get in touch with This e-mail address is being protected from spambots. You need JavaScript enabled to view it. .

We would love to hear your feedback on the new section and welcome any ideas on how we can build on this service for you. Email This e-mail address is being protected from spambots. You need JavaScript enabled to view it. .

What is Rb?

A basic explanation of retinoblastoma and its effects.

Genetics

Information about genetics, genetic testing and counselling, planning a baby and screening a child.

Second primary tumours

Information on possible long-term effects of retinoblastoma.

Meet-ups

Click here to find out about our social events.

Benefits of membership

Details on the benefits of becoming a member of the Childhood Eye Cancer Trust and what services we offer.

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.

Useful links

Links to some websites which we think are useful to anyone affected by cancer, particularly retinoblastoma.