Art Eyes is an Australian support group for anyone living with an artificial eye. You can join an email discussion group to connect with others in similar situations. Membership is not restricted to Australians. This site is in early development and holds much promise. It’s a great place for parents of kids with retinoblastoma.
The Childhood Eye Cancer Trust (CHECT) is a UK charity that provides information and support not only to children and their families, but to anyone affected by retinoblastoma.
The site contains clear information about every stage of the retinoblastoma journey, from diagnosis through to treatment and beyond. For families in the UK whose children are newly diagnosed and undergoing treatment, the charity offers personal support through its support workers who attend retinoblastoma clinics.
The charity also raises awareness about retinoblastoma in the community as well as amongst health professionals, and funds research into the cause and treatment of retinoblastoma.
This site includes information targeted at kids. Here, everything about retinoblastoma is explained in language that kids can understand, from the condition itself through to the various treatments, surgery and wearing an artificial eye. These pages are being updated soon, so have another look in about May this year.
It also has stories from kids and parents about their retinoblastoma journey.
CHECT offers free membership to anyone in the world, and puts out a newsletter with current information and stories.
Childhood Eye Cancer Trust
The Royal London Hospital
London E1 1BB
Phone: 020 7377 5578
RBI is an American charitable organisation providing information about retinoblastoma, the latest news, research projects and support.
This site is different in that it focuses on the befores and afters of retinoblastoma, which are just as vital as the condition itself.
One of their aims is to eliminate retinoblastoma throughout the world by awareness-raising and improving access to quality medical care and equipment. In 2000, RBI was involved in the passing of a Bill in California which promoted early and regular eye examinations in babies to detect the presence of tumours and other eye problems.
RBI also funds research into predicting and preventing secondary cancers in retinoblastoma survivors. Have a look under ‘Proteomics’ on their home page for more about this.
Children’s Hospital Los Angeles
4650 Sunset Boulevard MS #88
Los Angeles CA 90027
Phone: (323) 361 2291
Daisy’s Eye Cancer Fund (DECF) is committed to addressing the global needs of children with retinoblastoma.
Despite retinoblastoma being a curable condition, a large percentage of children in under-developed countries die because of lack of awareness and access to appropriate medical care. The charity aims to improve care and access to medical services in all parts of the world.
The charity acts on many fronts: awareness raising; education; fund-raising for research and other projects; and establishing self-sustaining diagnosis and treatment programs in different parts of the world.
DECF is working on a global retinoblastoma strategy focusing on education, clinical care, family support and research. Through collaborative research projects, a world retinoblastoma registry, best practice guidelines and a model strategy for resource poor countries, DECF aims to eliminate death by retinoblastoma in developing countries.
They also have children’s stories on their site. The difference is that the reader gets insight into the impact of retinoblastoma on the child and family in a resource poor country.
DECF has a newsletter with current information on their activities and stories.
Daisy’s Eye Cancer Fund
The Manna House
73 Boundary Brook Road
Oxford OX4 4AL
Phone: 01865 243 654
Email contact is via a contact form on their site.
This site (also maintained by Abby White who is involved in Daisy’s Eye Cancer Fund listed above) is dedicated to both retinoblastoma and another childhood cancer, optic glioma.
Set up like a one-stop shop, the site aims to inform, support and educate families and individuals on both these conditions. It also aims to connect people through a register to encourage personal support.
You can find basic information, as well as more detailed medical information from recognised medical journals. There are also links to other relevant websites, especially those of survivors or parents of children with either condition.
Contact with Abby is via the site on a contact form.