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.
- The Simple Answer
- Clear and concise two page outline of what retinoblastoma is. Great page to give to someone who wants the down and dirty on Rb without all the medical jargon. From the Montefiore Medical Center.
- The More Technical Answer
- Technical page for those who want the real nitty gritty details.
- Literature, Information, Clinical Trials, Statistics, et al.
- NCI'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 information and current news about clinical trials and trial-related data. From the National Cancer Institute.
- 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 diseases. This includes detailed descriptions, images and information about the diagnosis and treatments for each of these disorders.
- 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 you dec
- Living With an Artificial Eye
- Page about cleaning, swimming, make-up, etc.
- 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. - Offering Retinoblastoma (Rb) Information and Togetherness (ORbIT)
- Retinoblastoma information and resources. They also have a calendar tha allows you to "locate and add details of events relating to retinoblastoma around the globe" and, a great feature called "The Rb Family Directory." You can list your contact information on a password protected page and find others in your area with the disease.
- The Dolphin Pages
- This page has experiences and advice form parents of children diagnosed with retinoblastoma, pineoblastoma ad/or optic glioma. It is divided into three main sections: The Dolphin Family Pages (includes communicating with family and friends), The Dolphin Friendship Pages (includes what NOT to say), and The Dolphin Inspiration Pages (prose and poetry).
- Lost Eye
- Support and informational site for those who have, or about to lose an eye...
International Sites
- Brazil: Sociedade Beneficente Israelita Brasileira Hospital Albert Einstein (in Portuguese)
- This is a hospital in São Paulo that seems to give information about the disease.
- Canada: Canadian Retinoblastoma Society
- The Canadian Retinoblastoma Society (CRBS) is a federally incorporated charitable organization. We are run by a team of committed volunteers for the benefit of Canadians affected by retinoblastoma (RB). We are the only charity in Canada dedicated exclusively to education, advocacy, and support for the benefit of Canadian retinoblastoma families. Everyone on our Board of Directors has a personal connection to RB.
This website is available in French as well. - 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. In addition to linking to the Curie Institute, where Retinoblastoma is being researched, they also have a page of links connecting you to different organizations in France that are connected with loss of eyesight. - France: Rétinoblastome
- This links to a paper that I believe gives a general run down about Retinoblastoma: genetics, risk factors, diagnosis, etc.
- Germany: Retinoblastom - Informationen zum Augentumor
- Ich kann nicht Deutschen lesen, also weiß ich nicht, was es sagt, aber es schaut komplett.
Which means: I can't read German, so I don't know what it says, but it looks comprehensive. - Sweden: Retinoblastom
- This looks like it might be a personal page about someone named Hannah, but it also gives descriptions about Rb in Swedish, so it might be of interest to those who speak Swedish.
- 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 Retinoblastoma Society. - Retinoblastoma Tratamiento (en Los Estados Unidos, pero en Espanol)
- Resumen de información revisada por expertos acerca del tratamiento del retinoblastoma en niños.
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 last two aren't retinoblastoma sites exclusively, but apply to all vision diseases.
- Retinoblastoma International: Homepage
- Retinoblastoma International (RBI) is a public charitable organization dedicated to funding research, clinical treatment and international awareness for this devastating and potentially fatal childhood disease.
- Canadian Retinoblastoma Society
- The Canadian Retinoblastoma Society (CRBS) is a federally incorporated charitable organization. We are run by a team of committed volunteers for the benefit of Canadians affected by retinoblastoma (RB). We are the only charity in Canada dedicated exclusively to education, advocacy, and support for the benefit of Canadian retinoblastoma families. Everyone on our Board of Directors has a personal connection to RB. For more information on our Board of Directors click here.
While not directly affiliated with any particular doctor, hospital or program, the CRBS is proud to count many of Canada's RB specialists as members. We maintain an open relationship with all of these professionals and collaborate with them on many projects. - 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.
- CureSearch
- 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
- What happened to my eyes?
- Explaining retinoblastoma and what will be happening in simple, but not simplistic, terms
- Pediatric Clinical Trials at Memorial Sloan Kettering Cancer Center
- Doctors constantly investigate promising new cancer treatments, and many of these innovations have been responsible for changing some cancers from incurable to curable. Learn more about how clinical trials are important to the care of children with cancer, and browse a continually updated selection.
- 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 cancer." Best of all, it is downloadable. Take a look. - What to take to the Hospital
- If your Rb journey includes one or more trips to the hospital, take a look at this page from Orphans of the Cancer Story (orphan here refers to the rare disease of Rb, not actual human orphans).
- SuperSibs!
- 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.
- 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.
- Naoko's Story
- As Naoko's mother explains, she uses a translation software package to translate her Japanese site because she doesn't know English, so she ends up with sentences like "A side of the eyeball forward also had the thing which might be the tumor." There is a Japanese version of the site as well.
- Sarah's Story (Australia)
- Parents from Sydney write about their daughter's story. Colorful site.
- Sena's Story
- Sena's parents also provide Rb blankets for those who have Rb.
- Tony's Story
- Mike's son Tony.
- Verity's Story
- Simple page that tells the story from diagnosis to present with pictures.
- Some Rb Kids in AZ
- This page is part of a site for Retinoblastoma in Arizona - a non-profit organization for Arizona families with a child or children affected by retinoblastoma.
- Rebekah's Story
- This page describes the discovery, diagnosis, treatment, and progress of retinoblastoma in a little girl.
Retinoblastoma on Amazon
Eyelid, Conjunctival, and Orbital Tumors and Intraocular Tumors: An Atlas and Text
Amazon Price: $425.00 (as of 07/26/2008)
Pediatric Ophthalmology and Strabismus
Amazon Price: $274.00 (as of 07/26/2008)
Intraocular Tumors: An Atlas and Text
Amazon Price: $249.00 (as of 07/26/2008)
Genetic Resources
- 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).
Misc.
- 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, vision scientists and ophthalmic patients throughout the world.
The mission of the DJO is to serve as a resource for ophthalmologists, vision scientists and ophthalmic patients throughout the world. - 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.
- Retinoblastoma Medical Outline
- The Family Practice Notebook provides a technical one page outline for Rb that includes pathophysiology, differential diagnosis, prognosis, and more.
- THE MERCK MANUAL, Sec. 19, Ch. 266
- What The Merck Manual says about Rb.
- Koberg 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.
My Connection to Retinoblastoma
What is my interest in retinoblastoma? Twenty 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 is now an actor living in New York City. It's all fun and games . . .
Tactless T-shirt Designs
My brother has one of these shirts, so I decided to add this to the page. If you can't laugh, you'd have to cry.
Your Turn!
Especially let me know if there are any sites you think I am missing or any books that are vital.
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denman4
Great lens on a much-needed topic! I'm building a lens about Mesothelioma Cancer - Take a look at this lens and rate it for me! Thanks, denman4 Posted May 10, 2007 |
