Information for adults
Bringing together adults affected by retinoblastoma
Retinoblastoma is rare and meeting another person affected by it can be difficult as they are scattered throughout the UK. Each year we hold a meet-up for adults who have had retinoblastoma as a child to bring together individuals who would like to meet others and share experiences and information in a relaxed and informal setting. Partners, siblings and friends are also very welcome!
We have a closed Facebook group and a WhatsApp group for adults who have had retinoblastoma as a child called ‘Beyond Rb’. Ask your support worker for details about either / both.
You may also find it helpful to read other adults’ experiences in the ‘Stories & News’ section on the website, and through the link below.
CHECT resources
- My retinoblastoma summary: an interactive document where you can record your retinoblastoma history to share with healthcare professionals at medical appointments
- Cancer risk and self-care – risk factors and looking after yourself
- Late effects – health problems that could occur months or years after having retinoblastoma
- Having a baby after retinoblastoma – looks at the considerations involved and the options available
- Genetics of retinoblastoma – learn more about the genetics of retinoblastoma
- Supporting patients who have had retinoblastoma – a leaflet to be shared with your GP or other healthcare professional about the lifelong care of someone who has had retinoblastoma as a child.
- Glossary of terms
- A guide to holidays and wishes – a leaflet with a series of charities that can assist with holidays and wishes.
Useful links
Links to external websites have been carefully selected, but the content of external sites is not endorsed by Childhood Eye Cancer Trust.
Cancer Research UK – This site has a wealth of information about different cancers.
Macmillan – Provides practical, medical, emotional and financial support to people affected by cancer. It also campaigns for better cancer care.
British Blind Sport – Enjoying sport and recreational activities in the UK
Guide Dogs for the Blind – help adults and children to live actively, independently, and well with sight loss
Living Paintings – A free library of Touch to See books bringing to live the visual world for blind and partially sighted people.
LOOK – Supports visually impaired young adults up to 29 years to thrive
RNIB (Royal National Institute of Blind People) – Offers information, support and advice to people with sight loss.
Sight Scotland – Scotland’s charity for blind and visually impaired people.
Visibility Scotland – Supports visually impaired people across Scotland.
VocalEyes – Bring art and culture to life through audio description.
For some people, retinoblastoma can have a lifelong impact. We offer support to our members throughout their lives and we can help with any retinoblastoma-related concerns you may have.
If you’d like to talk to a CHECT support worker, click below or call us on 020 7377 5578