Retinoblastoma - Cancer of the Retina
Information about This Little Known Cancer
You will find links to information about Retinoblastoma for the lay person and for the person who wants a more technical definition. Also included in this lens are links to pages specifically for children, specifically for parents, and specifically who want to give money to fund research.
Photo by Ben Hammersley.
What is Retinoblastoma? - I want to know more.
- Literature, Information, Clinical Trials, Statistics, et al.
The NIH National Cancer Institute's gateway for information about retinoblastoma. This is a clearinghouse for anything you'll need to know. In addition to providing you with literature, statistics, and treatments information, it also points you infor
- The More Technical Answer
Here is a more technical page for those who want the real nitty gritty details.
- Last, But Not Least
A one stop shopping site of the more friendly variety. Find support groups, info for parents and more. From the Children's Cancer Web.
For Those With Retinoblastoma - or . . . I'm the patient
This list will link to pages (which may or may not be from other websites I link to) that seem particularly interesting and/or hard to find.
- The Eye Cancer Network
The Eye Cancer Network is the first online-based community dedicated to eye tumor patients. This site was developed to help patients around the world find much needed information and research on the various forms of ocular tumors and related eye dise
- How to Find a Cancer Treatment Trial (US)
This guide will help you to gather the information you will need to search for a cancer clinical trial; identify sources of clinical trial listings; learn about clinical trials that are of potential benefit to you; and ask questions that will help yo
- Living With an Artificial Eye
Find out about artificial eyes and eye loss, and how to find an Ocularist in your area.
- Retinoblastoma Survivors Listserv
Find other people who know how it feels to accidentally have your eye pop out at an inopportune moment. (Although it's never a good time for that to happen.) Get and give support.
- Forum on Yahoo for People Affected by Retinoblastoma.
KidsEyeCancerFriends: An open forum for friends and families affected by retinoblastoma, a pediataric eye cancer. You can view this site without being a Yahoo member, but you'll need to get a Yahoo! ID if you want to post or comment. It's free.
- Lost Eye
Support and informational site for those who have, or about to lose an eye...
- Adult Survivors of Retinoblastoma
There are several Facebook pages, but I found this the most compelling.
How to Make an Eye
- France: RETINOSTOP, association contre le Retinoblastome, Retinoblastoma
RETINOSTOP: association contre le retinoblastome,cancer de la retine,maladie orpheline qui touche l'enfant. Association of parents against retinoblastoma. This is a nice looking, complete site in French.
Ich kann nicht Deutschen lesen, also weiÃ ich nicht, was es sagt. Which means: I can't read German, so I don't know what it says.
- Sweden: Retinoblastom
Information on Retinoblastoma in Swedish, care of St. Erik's Eye Hospital.
- The UK: Childhood Eye Cancer Trust (CHECT)
The Childhood Eye Cancer Trust (CHECT) is a UK wide charity for families and individuals affected by retinoblastoma. We offer support and information, fund research and raise public awareness of this rare cancer. This was formerly named The Retinobl
- Rare Disease Portal
You can search information here about rare diseases, including Retinoblastoma, in French, English, German, Spanish, Italian, or Portuguese.
- Retinoblastoma - National Cancer Institute
Información general sobre el retinoblastoma. En los Estados Unidas, pero en Español.
Did You Know About Retinoblastoma Before Coming Here?
Charitable Retinoblastoma Organizations - I want to help.
Although the sites listed here are charities, they also have a lot of good information on them. Most or all of the people who voluteer with them have a child with Retinoblastoma, so it is a good resource.
The last two aren't retinoblastoma sites exclusively, but apply to all vision diseases.
- The Association for Research in Vision and Opthalmology
The purpose of ARVO is to encourage and assist research, training, publication, and dissemination of knowledge in vision and ophthalmology.
- Research to Prevent Blindness
Research to Prevent Blindness (RPB) is the leading non-government supporter of eye research directed at the prevention, treatment or eradication of all diseases that threaten vision.
National Childhood Cancer Foundation and Children's Oncology Group are partners in the search to cure childhood cancer; each with vital responsibilities concerning research; care; public awareness and fundraising.
Especially for Kids
- My Sister Can't See Me
This is a really cute book for preschool aged kids. My favorite line is "My sister can't see me. But she still steals my teddy bear." The author says, "This is pretty much how our son Brendan, then four, initially came to terms with his sister's can
Interesting organization that focuses on the siblings of children diagnosed with cancer. Has a parent guide.
Trading Tales - Personal Sites
A lot of people (parents, mostly) have created websites about retinoblastoma. These sites should give you a little of the "What it's like" feeling that the other pages can't. If you have a site you would like to add, let me know.
- Verity's Story
Simple page that tells the story from diagnosis to present with pictures.
- Joey's Story
Joey Bergsma's story does not end well, but it is amazing what a dedicated grandmother can do in memory of her grandson. On this page, you will see two lives saved (so far!) due to her efforts.
- Sydney’s Story
From the Children's Cancer Research Fund (CCRF)
- Sena's Story
To promote awareness of retinoblastoma, a life threatening childhood eye cancer. Sena's parents put this blog together.
- Rebekah's Story
This page describes the discovery, diagnosis, treatment, and progress of retinoblastoma in a little girl.
- National Cancer Institute - Search: Cancer Genetic Services Directory
Search: Cancer Genetic Services Directory
- National Society of Genetic Counselors
Get all your questions about genetic counseling (like What is a genetic counselor?) answered.
- Human Genome Database
OMIM, Online Mendelian Inheritance in Man, a database of human genes and genetic disorders developed by staff at Johns Hopkins and hosted on the Web by NCBI.
- Rb on Chromosome 13
This link takes you to a map of chromosome 13 and shows the exact location of where retinoblastoma occurs (gene map locus 13q14.1-q14.2).
- Developing Sensitivity Toward the Visually Impaired
Pretty self descriptive, this is a quick list of how to interact with someone who is visually impaired from the Department of Ophthalmology and Visual Sciences at the University of Illinois at Chicago.
- Ocular Prosthetics
This site contains great information about ocular prosthetics (artificial eyes), scleral shells and ocularists who fit them. You can find out pretty much anything you want to know about these things here.
- Parent Resources
This link is to the Southern Oregan Education Service District. Some of the information is, not surprisingly, centered around Oregan, but there are useful links for parents of children who are visually impaired and/or blind.
- The Digital Journal of Opthalmology
The DJO is a premiere peer-reviewed ophthalmic journal dedicated to the dissemination of ophthalmic information over the World Wide Web. The mission of the DJO is to server as a valuable resource for ophthalmologists, health and eyecare providers, vi
- Retinoblastoma Medical Outline
The Family Practice Notebook provides a technical one page outline for Rb that includes pathophysiology, differential diagnosis, prognosis, and more.
- Prosthetic eyes seen as family trade - latimes.com
This article features interesting pictures: Ocularists blend art and science to make prosthetic eyes. The only real way to learn the trade is to apprentice yourself to another ocularist, if you can find one willing to train you. Most opt to keep thei
My Connection to Retinoblastoma
What is my interest in retinoblastoma? 24 years ago, my brother was diagnosed with retinoblastoma after mentioning that he couldn't see out of one of his eyes. Luckily (well, comparatively lucky), it was a unilateral case. He now lives in the Allentown, PA area.
And Here He Is Years Later
Especially let me know if there are any sites you think I am missing or any books that are vital.