We are not responsible for the upkeep of information or accuracy on any of the websites listed below.
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.
Verity's Retinoblastoma Page
This site was made by a Chect member, Simon Clarkson. It shows the story (with pictures) of Verity's enucleation after being diagnosed with retinoblastoma. For any parents who are worried or unsure about the enucleation process this site can put your mind at rest. The site also contains information about how Verity's parents help her to care for her artificial eye and how they told Verity's two older siblings about the diagnosis and enucleation.
Daisy's Eye Cancer Fund
www.daisyfund.org 'A global response to childhood retinoblastoma'
Daisy's Eye Cancer Fund is a registered charity in England, and a special fund within SickKids Foundation (the Charitable Foundation of Toronto's Hospital for Sick Children), Canada.
Daisy's Eye Cancer Fund 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 diagnosed with retinoblastoma. Their goal is to encourage the development of 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 an entirely treatable cancer due to lack of awareness or resources.
Daisy's Fund is named in honour of a brave school girl from Devon, England and driven by the memory of another valiant little girl from Africa.
Retinoblastoma International (RBI)
www.retinoblastoma.net 'Fighting children's eye cancer'
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.
There is a link to a section called 'Physicians and other resources' which is useful if you do not live within the UK. There is also a link to 'Children's stories'.
Retinostop is a French charity which supports families and facilitates parents meetings, supports research and helps to equip treatment and 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.
Childhood Eye Cancer Foundation (Israel)
Eye Can supports children and families affected by retinoblastoma treated in Israel. They work with families from all backgrounds and religions Jewish, Muslim and Christian from Israel and the surrounding territories. In addition to providing support they raise awareness and enable further research into retinoblastoma.
The Canadian Retinoblastoma Society (CRBS)
CRBS is a charitable organisation which supports Canadians affected by retinoblastoma. It also works to raise awareness through education and also provides an advocacy service.
Eye Cancer Network: Ocular Oncology; diseases, treatment and research
'An educational website about the diagnosis and treatment of eye tumours. Find eye tumour doctors, eye tumour information and support (for eye tumour patients and their families)'
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.
eyeSIGHT International is a service network which strives to create the ultimate world network between anyone having the simplest interest in aiding the effort to help visually impaired individuals, prevent global
blindness, and support others in the field to solidify their own efforts. It offers connection to international retinoblastoma support groups.
eyeSIGHT is a non-governmental and non-profit international organisation dedicated to human eyes. eyeSIGHT INTERNATIONAL is committed to the global effort for treating and preventing sight dysfunction. It works to provide and establish a more personal, direct link between international communities, professionals, and those in need.