Resources
Information about retinoblastoma
In this section you’ll find links to information, downloadable leaflets and posters about retinoblastoma – from signs and symptoms, to teenage years, to adulthood as an Rb survivor – as well as useful links to articles and other organisations. If you’d like us to send you any of our leaflets or posters, or you want to raise awareness of retinoblastoma by helping us to distribute them, please call us on 020 7377 5578 or email info@chect.org.uk.
You can also find more information in our guide to retinoblastoma and keep up to date with latest news, events and research, plus read stories about others affected by eye cancer on the CHECT blog.
Diagnosis
- What is retinoblastoma? – information about Rb, including symptoms, diagnosis and treatment
- What causes white eye? – other causes of the “white glow” sometimes seen in a child’s eye
- Seen a white glow? – information about what to do if you’ve seen the “white glow” in a photograph
- Signs and symptoms awareness leaflet
- Importance of the red reflex test
- Introduction to CHECT – who we are and how we can help
- Just diagnosed – information for parents whose children have recently been diagnosed with retinoblastoma
Treatment
- Treatment – an overview of the different treatment options for retinoblastoma
- Side effects – some of the side effects caused by retinoblastoma treatment
- Artificial eyes – information about living with a prosthetic eye
- Chemotherapy – parents offer practical advice
- Enucleation – families tell us how they coped
- Radioactive plaque therapy – a practical look at what’s involved
Children’s area
- Age 1-6 – Rb information written especially for children (and their parents) aged one to six
- Age 7-11 – Rb information written for children (and their parents) aged seven to 11
- Age 12-18 – Rb information for teenagers
- At school or nursery – info for parents whose children are of school or nursery age
- Artificial eyes school action plan – be prepared for any issues that may arise
Visual impairment
- Early years and visual impairment – information for you and your family
- Monocular vision – how monocular vision can affect a child
Financial help
- A guide to finance and grants – finding help with additional costs during treatment
- A guide to benefits – helping you through the process of applying for Disability Living Allowance
- A guide to holidays
- Travel insurance
- CHECT Support Fund
- CHECT Support Fund Application Form
Membership
- CHECT membership form
- Read more about the benefits of membership
After retinoblastoma
- After retinoblastoma: what happens next? – what families can expect from their long term follow up team
- Adults after retinoblastoma – useful information for adults who have had Rb
- Genetics of retinoblastoma – learn more about the genetics of Rb
- Second primary tumours – risk factors and looking after yourself
- Rb into adulthood – this article explains the life-long aftercare you can expect to receive
- Planning a family – information about having a family after Rb and the options available
- From time to time we are asked if it is possible to take part in blood or organ donation after having retinoblastoma. These links take you to the latest information from the NHS on blood donation and organ donation.
Further reading
Carter, J (2010) Supporting patients after retinoblastoma. Practice Nursing 21(1): 38-40
Other useful links
We have chosen some websites which we think are useful to anyone affected by retinoblastoma. We are not responsible for the upkeep of information or accuracy on any of the websites listed below. If you’d like to comment on any of the links we have added or have not included please contact us at info@chect.org.uk.
Cancer organisations
Cancer Research UK
This site has a wealth of information about different cancers.
Camp Simcha
Improving the quality of life for Jewish children with cancer and other life-threatening illnesses. It provides support to the child and family and also provides unforgettable experiences.
Childhood Cancer Parents Alliance (CCPA)
CCPA is made up of parent-run organisations with common aims of working together to support children with cancer. CHECT is a member of CCPA.
Children’s Cancer and Leukaemia Group (CCLG)
Funds and supports research into childhood cancers, and helps young patients and their families with their information resources.
Clic Sargent
The UK’s largest children’s cancer charity provides specialist nurses, doctors, play specialists, Homes from Home, social care, family support, youth services, holidays and grants.
Cyclists Fighting Cancer
A charity which gives new bikes, tandems and specially adapted trikes to children and young people who have been affected by cancer throughout the UK – including those with a vision impairment.
Ellen MacArthur Cancer Trust
A national charity that rebuilds confidence after cancer, using sailing to support, empower and inspire young people between the ages of 8-24.
Macmillan
Provides practical, medical, emotional and financial support to people affected by cancer. It also campaigns for better cancer care.
Rare Disease UK
Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them.
Teenage Cancer Trust
Works to raise funds, educate, and support teenagers fighting cancer.
Further reading
This link takes you to a page about the long term follow-up guidelines for survivors of childhood, adolescent and young adult cancers. They were developed as a collaborative effort of the nursing discipline and the late effects committee.
The purpose of these guidelines is to provide recommendations for screening and management of late effects that may potentially arise as a result of therapeutic exposures used during treatment for paediatric malignancies. There is a link on this page to the guidelines. However, we recommend you review these with the assistance of a healthcare professional knowledgeable about the long term follow-up care for survivors of childhood, adolescent and young adult cancers. Survivorship guidelines
Retinoblastoma (Rb)
The links below are for different retinoblastoma organisations and charities. Please be aware that the numbers of children affected by retinoblastoma vary in each country and treatment protocols also differ. We would like you to be aware of the following points.
- Retinoblastoma affects children from all races and occurs in both genders equally.
- In the developed world, retinoblastoma can be cured successfully using a range of treatments and 98% of children will survive retinoblastoma. Most children in the developed world are diagnosed at a stage when the cancer is contained within the eye.
- Due to a lack of awareness of eye cancer, late diagnosis and poor access to treatment, children in developing countries are often diagnosed at an advanced stage so the disease can be fatal.
Eye Cancer Network Ocular oncology; diseases, treatment and research
An American website, supported by The Eye Care Foundation, that is concerned with all forms of eye cancer but has a link to retinoblastoma on the home page. The information is simple but informative; it is interesting to look at retinoblastoma alongside other forms of eye cancer.
Kinder Augen Krebs Stiftung (KAKS)
German Rb organisation (English version of website available).
Retinoblastoma International (RBI)
RBI is a non profit organisation founded in LA in 1998. Since then RBI has been committed to supporting education, clinical care, research, early diagnosis and awareness. Their website has a section called ‘Physicians and other resources’ which is useful if you do not live within the UK. There is also a ‘Children’s stories’ section of the website.
Retinostop
Retinostop is a French charity which supports families and facilitates parents’ meetings, supports research and helps to equip treatment centres. They promote early diagnosis amongst health professionals and government administrations. They produce a booklet for children about a girl called Mirabelle and her cat Tino who both need artificial eyes made for them. Click here for the English version of the site.
World Eye Cancer Hope
Previously Daisy’s Eye Cancer Fund, World Eye Cancer Hope is the world’s only retinoblastoma charity taking a global approach to the needs of children affected by this cancer. With a particular focus on developing countries, they are committed to improving care for all children with retinoblastoma. Their goal is to develop sustainable, locally managed diagnosis and treatment programs in under-served regions of the world so that, one day soon, no child will face death from this entirely treatable cancer due to lack of awareness or resources.
Genetics
Genetic Alliance UK
The Genetic Alliance UK is a national charity of patient organisations, supporting those affected by a genetic condition. The Childhood Eye Cancer Trust is a member of the Genetic Alliance UK.
Retinoblastoma Genetics Screening Unit
The Retinoblastoma Genetics Screening Unit at Barts 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, your local genetic counsellor and your ophthalmologist may find useful.
Visual impairment
Reading for parents
- Babies and children with visual impairment development journal – early support, Council for Disabled Children
- “Show me what my friends can see”: a development guide for parents of babies with severely impaired sight and their professional advisors. By Sonksen & Stiff, available from your support worker
- Looking ahead: a parent’s guide – RNIB
- Early years – RNIB
Play
- The RNIB and the British Toy and Hobby Association have a leaflet about toys and play
- Rompa provides sensory environments
- Sensory Toy Warehouse specialises in sensory activities, toys and equipment
Special educational needs
- IPSEA Independent Parental Special Education Advice
- Information , Advice and Support Services (IASS) Network
Organisations
Action for Blind People provides practical and emotional advice and support across England to people who are blind or partially sighted, their friends and family.
British Blind Sport enjoying sport and recreational activities in the UK
Calibre Audio Library provides a subscription-free service of unabridged audio books for adults and children with sight problems, dyslexia or other disabilities, who cannot read print.
Clear Vision a UK postal lending library of mainstream children’s books with added braille. The books all have braille (or Moon), print and pictures, making them suitable for visually-impaired and sighted children and adults to share.
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 to thrive
Royal Blind provides services for visually impaired adults and children in Scotland.
Royal National Institute of Blind People (RNIB) offers information, support and advice to people with sight loss.
Sightline a directory for local services for blind and partially sighted people.
throughscarlettseyes.com community information hub for parents of visually impaired children
VICTA supports blind and partially sighted children, young people (under 29) and their families across the UK.
VocalEyes bring art and culture to life through audio description.
Visibility provides support services to visually impaired children and adults living in Scotland.
WonderBaby.org a website dedicated to helping parents of young children with visual impairments as well as children with multiple disabilities.