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Eye Health Organizations Database

Collage of patients and professionals

View Alphabetical List

American College of Medical Genetics (ACMG)
7220 Wisconsin Avenue, Suite 300
Bethesda, MD 20814
• Represents the medical genetics profession dedicated to making genetic services available to and improve the health of the public. Promotes the development and implementation of methods to diagnose, treat and prevent genetic diseases. Offers a “Find a Geneticist” service.

Institute for Families
4650 Sunset Blvd.
Mail Stop 111
Los Angeles, CA 90027
(323) 361-4649
• Offers support and information to families of children with visual impairment. Provides direct counseling support to families at no cost after a diagnosis is made. Offers a nationwide telephone counseling service. Publishes Retinoblastoma Support News and Parent to Parent as well as the books My Fake Eye, the Story of My Prosthesis and My New Glasses: A Book for Parents and Children. Videos are available.

National Cancer Institute (NCI)
National Institutes of Health
Public Inquiries Office, Suite 3036A
6116 Executive Boulevard, MSC8322
Bethesda, MD 20892-8322
(301) 435-3848
1-800-332-8615 (TTY)
• Conducts and supports research on cancer. Offers information for the general public and cancer patients and their families, including materials on ocular melanoma and retinoblastoma.

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
(203) 744-0100
(203) 797-9590 (TDD)
• Acts as a clearinghouse for information about rare disorders. Fosters networks between families with similar disorders. Educates the general public and medical profession about the existence, diagnosis, and treatment of rare disorders.

National Society of Genetic Counselors (NSGC)
401 N. Michigan Avenue
Chicago, IL 60611
(312) 321-6834
• Represents the genetic counseling profession. Provides information and support to families who have members with birth defects or genetic disorders and to families who may be at risk for a variety of inherited conditions. Offers a “Find a Counselor” service.

Retinoblastoma International
18030 Brookhurst Street, Box 408
Fountain Valley, CA 92708
• Supports research, education, clinical care, safer/more effective treatments, early diagnosis and awareness related to retinoblastoma. Provides online information to parents, family, and friends, as well as medical education and hands-on training in the management of retinoblastoma to health care professionals.

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Inclusion on this page does not imply endorsement by the National Eye Institute or the National Institutes of Health.

Department of Health and Human Services NIH, the National Institutes of Health