Eye Health Organizations Database

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American Association of the Deaf-Blind (AADB)
8630 Fenton St., Suite 121
Silver Spring, MD 20910-4500
(301) 495-4403
(301) 495-4402--TTY
http://www.aadb.org/
• Encourages independent living for individuals who are deaf-blind. Provides technical assistance to persons who are deaf-blind, families, educators, and service providers.

American College of Medical Genetics (ACMG)
9650 Rockville Pike
Bethesda, MD 20814-3998
• 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.

DB-LINK: National Information Clearinghouse on Children Who are Deaf-Blind
345 N. Monmouth Avenue
Monmouth, OR 97361
1-800-438-9376
1-800-854-7013--TTY
http://www.tr.wou.edu/dblink/
• Offers information that assists education, medical, and service personnel in providing comprehensive services to/for infants, toddlers, children, and youth who are deaf-blind in the U.S.

(The) Foundation Fighting Blindness
Executive Plaza 1, Suite 800
11435 Cronhill Drive
Owings Mills, MD 21117-2220
1-888-394-3937
1-800-683-5555 (TDD)
(410) 568-0150
(410) 363-7139 (TDD)
http://www.blindness.org
• Acts as a clearinghouse and distributor of self-help program information. Sponsors research on the cause, prevention, and treatment of retinitis pigmentosa, Usher's syndrome, macular degeneration, and other retinal degenerative conditions. Conducts education programs for those affected by the disorders as well as professionals and the general public. Coordinates a national information and referral service and the Retinal Donor program. Publishes newsletters and other publications.

Helen Keller National Center for Deaf-Blind Youths & Adults (HKNC)
141 Middle Neck Road
Sands Point, NY 11050
(516) 944-8900
http://www.hknc.org/
• Offers intensive and comprehensive rehabilitation training to individuals who are deaf-blind. Provides evaluation and training in communication skills, adaptive technology, orientation and mobility, independent living, work experience, and other support services.

National Eye Institute (NEI)
National Institutes of Health
31 Center Drive MSC 2510
Bethesda, MD 20892-2510
(301) 496-5248
http://www.nei.nih.gov
• Conducts and supports research on eye diseases and vision disorders. Offers free publications for the general public and patients.

National Family Association for Deaf-Blind (NFADB)
141 Middle Neck Road
Sands Point, NY 11050
1-800-255-0411
http://www.nfadb.org/
• Serves as the largest national network of families focusing on issues surrounding deaf blindness.

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
1-800-999-6673
(203) 744-0100
(203) 797-9590 (TDD)
http://www.rarediseases.org
• 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
http://www.nsgc.org/
• 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.

Office of Rare Diseases, National Institutes of Health
6100 Executive Boulevard
Room 3B01, MSC 7518
Bethesda, MD 20892
(301) 402-4336
http://rarediseases.info.nih.gov
• Coordinates the Rare Disease Clinical Research Database (RDCRD). Offers information on more than 6,000 rare diseases, current research and clinical trials, and support groups.