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Eye Health Organizations Database

Collage of patients and professionals

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American Association of the Deaf-Blind (AADB)
8630 Fenton St., Suite 121
Silver Spring, MD 20910-3803
(301) 495-4403
(301) 495-4402--TTY
• 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)
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.

Coalition for Usher Syndrome Research
c/o The Decibels Foundation
1269 Main Street
Concord , MA 01742
617 951 9542.
• The Coalition for Usher Syndrome Research is dedicated to helping families cope with Usher Syndrome while working diligently to find a cure. Our goal is simple: Provide hope to families with Usher Syndrome. Hope here comes in many forms, from the opportunity to connect with other families, to the ability to access the latest information from the world's leading researchers, to the chance to directly participate in the search for a cure.

Foundation Fighting Blindness
7168 Columbia Gateway Drive, Suite: 100
Columbia, MD 21046
1-800-683-5551 (TDD)
(410) 423-0600
(410) 872-0639 (TDD)
• The urgent mission of The Foundation Fighting Blindness is to drive the research that will provide preventions, treatments, and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases. For a $25.00 annual membership fee, FFB offers information and referral services for affected individuals and their families as well as for doctors and eye care professionals. The Foundation also , provides comprehensive information kits on retinitis pigmentosa, macular degeneration, and Usher syndrome. Their newsletter, InFocus, and their e-newsletter, InFocus online. present articles on coping, research updates, and Foundation news. InFocus is published 3 times per year; InFocus online is sent approximately 3 times per year. Their national conference is usually held every year.

19655 1st Avenue South, Suite 101,
Normandy Park, WA 98148
(206) 429-3884
• Our mission is to support Usher syndrome research and awareness. Through excellent focus, we can create, communicate and gain knowledge of this currently incurable retinal disorder. Our funds will be directly focused to Usher syndrome research and by doing so we can target the needs of researchers and scientists. With our help a cure can be found.

Helen Keller National Center for Deaf-Blind Youths & Adults (HKNC)
141 Middle Neck Road
Sands Point, NY 11050
(516) 944-8900
• 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.

Megan Foundation
5532 Southwest Ave
Saint Louis , MO 63139
(314) 283-1227
• In 2008, Megan O'Neill and her mother, Theresa Bettlach-Cacciatore, began The Usher Syndrome Foundation (now The Megan Foundation) to raise funds for research in hopes of finding a cure for this disorder. With the help of many family members and friends, they plan to continue their efforts until an answer is found.

National Consortium on Deaf-Blindness (NCDB)
345 N. Monmouth Avenue
Monmouth, OR 97361
• The National Consortium on Deaf-Blindness (NCDB) works collaboratively with families, federal, state and local agencies to provide technical assistance, information and personnel training in the area of deaf-blindness. NCDB brings together the resources of three agencies with long histories of expertise in the field of deaf-blindness to identify the needs of children, their families and their education teams, to support, through information and technical assistance, the capacity of state and local agencies to meet those needs.

National Eye Institute (NEI)
National Institutes of Health
31 Center Drive MSC 2510
Bethesda, MD 20892-2510
(301) 496-5248
• 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
• 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
(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.

Office of Rare Diseases, National Institutes of Health
6100 Executive Boulevard
Room 3B01, MSC 7518
Bethesda, MD 20892
(301) 402-4336
• 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.

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