Additional Resources
Usher Syndrome Coalition
The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.
Foundation Fighting Blindness
The Foundation Fighting Blindness was established in 1971 by a passionate group of families driven to find treatments and cures for inherited retinal diseases that were affecting their loved ones.
Today, the Foundation Fighting Blindness is the world’s leading private funder of retinal disease research. That funding has been a driving force behind the progress toward cures, including the identification of more than 270 genes linked to retinal disease, and the launch of 40 clinical trials for potential treatments.
My Retina Tracker Program
The Foundation Fighting Blindness, in partnership with Blueprint Genetics and InformedDNA®, offers an open-access, no-cost genetic testing program called the My Retina Tracker® Program. This program is for individuals living in the United States with a clinical diagnosis of inherited retinal degeneration (IRD).
The program provides patients with a 322-gene panel targeting relevant genes associated with IRD. The panel's unique features include the entire mitochondrial genome, full RPGR coverage, high-resolution copy number variant detection, and comprehensive coverage of IRD-related non-coding variants.
Lighthouse for the Blind and Visually Impaired
Headquartered in San Francisco, California, LightHouse for the Blind and Visually Impaired provides education, training, advocacy, and community for blind individuals in California and around the world. Founded and based in San Francisco since 1902, the LightHouse is one of the largest and most established comprehensive blindness organizations in North America, with a wide variety of programs to suit a wide variety of needs, as well as a rich network of blindness advocates and professionals.
LightHouse for the Blind and Visually Impaired is a 501(c)(3) nonprofit organization, tax EIN 94-1415317.
NVISION’s Internet Navigation for Individuals with Low Vision or Blindness
NVISION is one of the nation’s leading providers of eye clinics offering full ophthalmic physician services. Headquartered in Aliso Viejo, California, NVISION operates over 80 eye clinic locations with another 50+ locations nationwide through our affiliate network of providers. NVISION is an innovative leader in ophthalmology, with a patient first commitment.
NVISION published an educational guide to navigating the internet for individuals with low vision or blindness. Their free resource covers the built-in tools that make sites more accessible for people with vision loss.