Skip to main content
Retinoblastoma
  HOME
ADULT EYE TUMORS-
Anatomy of the Eye-
Eye Tumors-
Diagnosis-
Treatment-
Frequently Asked Questions-
Research-
Resources-
Contact Us-
RETINOBLASTOMA-
Anatomy of the Eye-
Diagnosis-
Examination Under Anesthesia-
Treatment-
Prosthesis-
Coping with Cancer-
Photogallery-
In the News-
 Resources-
About Us-
PRINT VERSION (PDF)

 

CANCER RESOURCES

New England Retinoblastoma Support Group
Provides emotional support and resources for families with retinoblastoma. Information and referral, phone support, conferences, literature, advocacy.
Phone: 1-800-562-6265
Address: New England Retinoblastoma Parents Support Group, P.O. Box 317, Watertown, MA 02272

American Cancer Society
Health information, coping with cancer, new treatment and research, discussion groups, locate resources in your community.
Phone: 1-800-227-2345l
www.cancer.org

Children's Cancer Association
Visit this site and request a copy of The Kids Cancer Pages. It is a comprehensive national resource directory on childhood cancer. It was created to help connect and network families to organizations, information, resources, and to each other on a national basis.
Phone: 1-503-244-3141
www.ChildrensCancerAssociation.org

National Cancer Institute
The U.S. Government's primary agency for cancer research and information.
Phone: 1-800-4-CANCER
www.nci.nih.gov

Young People With Cancer
This book provides parents with information on the most common types of cancer, treatments and side effects and common issues that arise when a child is diagnosed with cancer.
Phone: 1-800-4-CANCER (1-800-422-6237) and select the option to order publications Monday through Friday, 9:00 a.m. to 4:30 p.m. local time (within the U.S. and its territories).

The National Children's Cancer Society
Provides information, emotional and financial support to children with cancer and their families for expenses related to cancer treatment. The website has special links just for kids and information on healthy caregiving for families.
Phone: 1-800-532-6459
www.children-cancer.com

Eye Cancer Network
Educational, diagnostic and treatment information about ocular cancers.
www.eyecancer.com

Band-Aids and Blackboards
A website about growing up with a medical problem from the perspective of kids and teens.
www.faculty.fairfield.edu/fleitas/sitemap.html

National Eye Institute
The U.S. Government agency conducts and supports research to help prevent and treat eye diseases. The website provides health information in English and Spanish.
Phone: 1-301-496-5248
www.nei.nih.gov

Patient-Centered Guides
Childhood Cancer Survivors; A Practical Guide to Your Future
Childhood Cancer: A Parent's Guide to Solid Tumor Cancers
Books written to give survivors and their families the information they need.
Phone: 1-800-998-9938
www.patientcenters.com

Candlelighter's Childhood Cancer Foundation
A national non-profit membership organization whose mission is to educate, support, serve, and advocate for families of children with cancer, survivors of childhood cancer, and the professionals who care for them.
Phone: 800-366-2223
www.candlelighters.org

Visual Impairment Resources

Visually impairment can be described as partially sighted, low vision, hard-of-seeing, or blind based on the degree of visual impairment. A person is considered LEGALLY blind when the best-corrected visual acuity is 20/200, or the person's visual field is 20 degrees or less. Few legally blind persons have no sight; in fact, most have some remaining vision. Partially sighted or low vision generally refers to a severe visual impairment, not necessarily limited to distance vision. Low vision applies to all individuals with sight who are unable to read the newspaper at a normal viewing distance, even with the aid of eyeglasses or contact lenses. They use a combination of vision and other senses to learn, although they may require adaptations in lighting or the size of print, and, sometimes, Braille. Generally, the partially sighted individual has a central visual acuity range of 20/70 to 20/200 in the better eye with best correction by glasses.

Florida Division of Blind Services (DBS)
This state agency provides vocational rehabilitation and employment services for blind and visually impaired Florida residents. Services include school to work transition, job placement, counseling, vocational and academic training, orientation and mobility training, personal and social adjustments services and post-employment services. A part of DBS, the Florida Department of Education specialists from Children and Family Services serve eligible children who are blind or visually impaired so that they may reach educational and independent living goals.
Phone: 1-800-342-1330
www.myflorida.com/dbs

National Association for Parents of Children with Visual Impairments (NAPVI)
A national non-profit organization that enables parents to find information and resources for their children who are blind or visually impaired. NAPVI offers information and referral services, initiates outreach by providing seed money to promotes the development of state and local organizations, has a quarterly publication, advocates for educational needs, and offers emotional support and networking opportunities.
Phone: 1-900-562-6265
www.spedex.com/napvi

V.I. Guide
An Internet site that contains information on topics is pertaining to parenting and teaching children with a visual impairment. Information and links to other sites about vision-related services, special education, assistive technology and products, laws and legislation, entertainment, research, and other organizations and groups that might be of interest.
www.viguide.com

The Hadley School for the Blind
The Hadley School offers Parent/Child and Parent/Family correspondence courses on a variety of topics. Parent/Child courses include: Reach and Teach, which provides step-by-step teaching techniques and guideline to help parents assess and build on a child's strengths; Child Development; Partners in Education; Learning, Play, and Toys; and Early Independence. Parent/Family course topics include Abacus I and II; Accessing Local Sports and Recreation; Braille Reading for Family members, College Bound, the Human Eye; Independent Living; Personal Computers; self-esteem.
Phone: 1-800-323-4238
www.hadley-school.org

Blind Children's Center
This Los Angeles organization has a number of videos and publications (some in Spanish) that can provide useful information for families of blind or visually impaired children. Topics include: beginning nurturing, social, play and language interactions; teaching young children who are visually impaired; common concerns for the preschool child who is visually impaired or blind; feeding a child with a visual impairment; movement development for babies who are visually impaired; orientation and mobility for preschool children designing and constructing simple adaptive mobility devices for preschool children; multiple disabilities; and parents talk about their feelings.
Phone: 1-800-222-3566
www.blindcntr.org

Other Organizations

American Council of the Blind
Phone: 1-800-424-8666
www.acb.org

American Federation for the Blind
Phone: 1-800-232-5463
www.afb.org

American Printing House for the Blind
www.aph.org

Lighthouse International
www.lighthouse.org

National Federation of the Blind
www.nfb.org

Links to Other Websites

Eye Resources on the Internet
webeye.ophth.uiowa.edu/dept/websites/eyeres.htm

International Organization for the Blind
www.io4b.org

Blindness Resource Center
www.nyise.org/blind

A Blind Net
www.blind.net

Snuggl' Up, Inc
Phone: 305-931-6333
www.snugglup.com

Prosthesis

SNG Prosthetic Eye Institute
www.prostheticeye.com

Travel

Angel Flight
Angel Flight is a non-profit, volunteer pilot organization that coordinates free air transportation on corporate aircraft for those with medical needs.
Phone: 1-800-352-4256
www.angelflightse.org

Midwest Express Miracle Miles
One free flight, thereafter flights are discounted. No financial requirements.
Phone: Call Natalie Fuerst at 1-414-570-3644

Corporate Angels
Private jets used by corporations that have empty seats, free flights. No financial requirements.
Phone: 1-914-328-1313
www.corpangelnetwork.org

Northwest Airlines, Kid Cares Program
Those with financial need have priority.
Phone: 1-612-726-4206
www.nwa.com/corpinfo/aircares/about/kidcares.shtml

American Airlines, Aadvantage Miles for Kids in Need
Helps those in financial need.
Phone: 1-817-963- 8118

The National Patient Travel HELPLINE
Helps those in financial need.
Phone: 1-800-296-1217
www.patienttravel.org

Housing

American Cancer Society's Winn-Dixie Hope Lodge
The American Cancer Society understands the challenges that families face when a loved one needs cancer treatment far from home. It can be uncomfortable and extremely costly to stay in hotels for weeks at a time. That's where Hope Lodge can help. It offers a friendly environment with no limit on the length of stay. Hope Lodge provides several kitchen areas where families can cook their own meals. While Hope Lodge does not provide medical, counseling, or religious services, it is far more than a hotel. It's a home-away-from-home when it's needed most.
Phone: 1-800-ACS-2345; In Miami: 305-547-2210; Other areas: 1-317-415-5000

Ronald McDonald House
Since 1974, families around the world have been calling Ronald McDonald House a "home-away-from-home."
Address: Ronald McDonald House Charities, One Kroc Drive, Oak Brook, Illinois, 60523
Phone: 1-630-623-7048
www.rmhc.com