Resources for Parents: |
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| The John and Marcia Carver Nonprofit Genetic Testing Laboratory is dedicated to providing non-profit genetic testing for rare eye diseases to meet a societal need. Most of the diseases that we study are so rare that commercial tests would be unlikely to be viable for the long term. As a result, many individuals affected with these diseases and their families would have little access to molecular information. Genes that are available for screening by the Carver Laboratory have previously been extensively studied in the research laboratories of Dr. Stone and Dr. Sheffield. By incorporating this research information into the design of the tests, the laboratory is able to offer genetic tests that provide the most clinically relevant information to patients and their families while keeping the tests affordable. |
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| The Foundation for Retinal Research (FRR) was founded in 1998 at a time when very little was known or published about Leber's Congenital Amaurosis (LCA). Families affected by Leber's Congenital Amaurosis had a difficult time acquiring information and making connections to help them understand the eye disorder. The Foundation for Retinal Research has bridged the gap between families and research. This website offers people the most current medical and research information available, connects them to other families and provides links to services related to the field of blindness. |
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| The urgent mission of the Foundation Fighting Blindness, Inc. (FFB) is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases. |
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| The Hadley School for the Blind is dedicated to promoting independent living through over 100 distance education programs for blind people, their families and blindness service professionals. |
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| The National Association for Parents of Children with Visual Impairments (NAPVI) is a non-profit organization of, by and for parents committed to providing support and education to the parents of children who have visual impairments through its’ national and regional conferences and workshops, publications and international network of parents. NAPVI is a core partner for the Families & Advocates Partnership for Education (FAPE) project spearheaded by the Parent Advocacy Coalition for Education Rights (PACER). |
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| A listserv for everyone interested in sharing and sourcing information relating to the genetic disorder Leber's Congenital Amaurosis. |
