|
Retinoblastoma Menu
 About Retinoblastoma
Organisations / Support Groups
Resources for Parents and the Public
Home Pages of Children and Families
Resources for Health Professionals
Search Elsewhere for Resources
Retinoblastoma is a rare tumour of the eye which develops in the cells of the retina, most patients are
under 5 years old. Sometimes only one eye is affected (unilateral-retinoblastoma ), but in about
two fifths of patients both eyes have the disease (bilateral-retinoblastoma ). Some cases are
known to be hereditary.
This page contains links to information specifically related to Retinoblastoma, other relevant resources are availible via the Main Menu of Children's Cancer Web.
 Retinoblastoma Menu
 Site Menu
Disclaimer
Suggest a site
National Retinoblastoma Research and Support Foundation (USA) A support group established by parents and friends of children treated at Bascom Palmer Eye Institute. The NRRSF aims to establish a national network to provide support to parents with children affected by retinoblastoma.
R-BLASTOMA - Email list (ACOR) Retinoblastoma Information and Support
Retinoblastoma Society, The (UK) A national organisation providing support and information for people with retinoblastoma and their families. The Society has a network of regional co-ordinators and produces a newsletter for families affected by retinoblastoma.
-
See also National Childhood Cancer Organisations
See also Childhood Cancer Support Groups
See also National Cancer Organisations (in InterNet Resources for Cancer)
Retinoblastoma Menu
Site Menu
Disclaimer
Suggest a site
Parent's information for Retinoblastoma (CancerNet) Information about the disease, staging, and treatment overviews. It is reviewed each month by a panel of medical experts.
A Parent's Guide to Understanding Retinoblastoma A site by David H. Abramson, MD, and Christopher M. Frank (Ophthalmic Oncology Center, NY, USA) The guide includes several chapters covering various aspects including diagnosis, treatment and genetics.
Die Retinoblastom Seite - The Retinoblastoma Page (Germany) A German language site created by the parents of Christopher who was diagnosed with retinoblastoma in 1989 at age 1. It includes detailed information about retinoblastoma by a medical specialist and an Email list about blindness.
Division of Ophthalmology - Childrens Hospital Los Angeles (USA) The center includes physicians who specialise in treating retinoblastoma. The web pages include a summary of ophthalmology programs and services including experimental therapeutics.
General information for retinoblastoma (St Jude's Children's Research Hospital)
Hope for Parents of Blind Children A book by parents including their experiences of bringing up thier son who was born blind. Download free in PDF format.
Pediatric Oncology Resource Center: Retinoblastoma (USA) This page contains information and links on various aspects of retinoblastoma. It is part of the Pediatric Oncology Resource Center, a site produced by parents of children with cancer, hosted by Association of Cancer Online Resources.
Retinoblastoma (NRRSF) Information for parents by Peter Kaiser, MD, Ingrid Scott, MD, Joan O'Brien, MD and Timothy G. Murray, MD
Retinoblastoma (Family InterNet. Com) A description of the disease.
Retinoblastoma (Family Village, USA) This site includes the addresses of national retinoblastoma organisations.
Retinoblastoma (UK) a factsheet produced by the United Kingdom Children's Cancer Study Group and CancerBacup linked to the UKCCSG booklet "A Parent's Guide to Children's Cancers".
Retinoblastoma and the RB1 Gene (National Center for Biotechnology Information) An overview of retinoblastoma and the RB1 gene with links to other gene databases.
Retinoblastoma Email List A discussion group for people affected by Retinoblastoma. It is run by the Retinoblastoma Society (UK) to provide a forum to ask questions, seek advice and get opinions from other affected people and their families.
-
See also General Childhood Cancer Resources for Parents
See also Retinoblastoma Organisations
See also Home Pages of Children and Families (Retinoblastoma)
Retinoblastoma Menu
Site Menu
Disclaimer
Suggest a site
Christian Hernandez Appeal page for young boy from Honduras, diagnosed with retinoblastoma, age 3.
Help Jesse Jesse has bi-lateral Retinoblastoma that spread to his spinal fluid and was treated with a bone-marrow transplant using his own cord blood. The Web site includes updates on Jesse, pictures, links to medical and other information about retinoblastoma.
 Joey Bergsma Retinoblastoma Awareness Page This site has been lovingly crafted by the Grandfather of Joey, who died from metastatic retinoblastoma, age 3. It aims to raise awareness of retinoblastoma and advocates infant eye screening to detect retinoblastoma and other eye problems.
Mike's "Life with Retinoblastoma" By a parent with a young child who has retinoblastoma. Information, pictures and links.
Naoko's Page (Japan) These pages have been created by Naoko's mother. English and Japanese language with their experiences of diagnosis and treatment.
Sarah's Retinoblastoma HomePage (Australia) Sarah was diagnosed with retinoblastoma at age 4 yrs. The site includes information and pictures of Sarah.
Verity's Rb Page (UK) Verity was diagnosed with unilateral retinoblastoma at the age of 13 months and was treated at St Barts Hospital where she had her left eye enucleated in May 2000. The Web site, created by her father, includes pictures of Verity after the operation.
-
See also Home Pages of Children and Families (all childhood cancers)
Physician's PDQ statement for Retinoblastoma (CancerNet) A referenced overview of the disease, cellular classification, staging, and current treatment overviews. It is reviewed each month by experts at the NCI.
British Journal of Ophthalmology
Case study - Recurrent Orbital Retinoblastoma after Enucleation (Digital Journal of Ophthalmology) referenced case study with images.
Division of Ophthalmology - Childrens Hospital Los Angeles (USA) The center includes physicians who specialise in treating retinoblastoma. The web pages include a summary of ophthalmology programs and services including experimental therapeutics.
OPHTHALMO Web - Pathology site Includes access to an online database of orbital eye lesions (English and French Language)
Retinoblastoma (USA) Part of a SEER report on cancer incidence and survival among children and adolescents; 1975-1995. PDF format.
Retinoblastoma - list of support groups / Links (Genetics Education Center)
Retinoblastoma and the RB1 Gene (National Center for Biotechnology Information) An overview of retinoblastoma and the RB1 gene with links to other gene databases.
| Search for Related Abstracts for: "retinoblastoma"
These resources are intended for Health Professionals and Researchers
| | CANCERLIT: Eye Cancers (National Cancer Institute) On-line abstracts for health professionals. Sorted by month and year for Intraocular Melanoma, and Retinoblastoma.
| | Search CancerLit (University of Bonn)
| | Search Medline (National Library of Medicine, USA) for those without local access
| | Search OMIM (National Center for Biotechnology Information)
|
-
See also General Childhood Cancer Resources for Physicians
See also Journals and Bulletins (in InterNet Resources for Cancer)
Retinoblastoma Menu
Site Menu
Disclaimer
Suggest a site
Remember when using search tools on the Internet:
- Results may include links to information related to adult cancers; these are often quite different to childhood cancers even though they may have identical or similar names.
- Results may include information intended for different audiences; for example information for oncologists often assumes a great deal of prior knowledge and specialist education.
- The search term may include a word that is spelt differently in American and UK English (eg. Leukemia vs. Leukaemia, tumor vs. tumour). The pre-configured searches in this guide use American spellings as there are more North American based web
resources.
- The quality of information on the InterNet is variable - users should be aware of source reliability issues
- Parent's are strongly advised to discuss their information requirements with their doctor, who knows their child's specific details.
Search Selected Cancer Sites for "retinoblastoma"
Search the InterNet for "retinoblastoma"
Retinoblastoma Menu
Site Menu
Disclaimer
Suggest a site
|
Menu>
Cancer-Types> Retinoblastoma