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The Foundation Fighting Blindness– The world’s leading private source for inherited retinal disease research funding. FFB is committed to driving research until the entire spectrum of retinal degenerative diseases is eradicated.

Visit their site for updates, advice, news and inspiration.

The FFB provides My Retina Tracker 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 inherited retinal degenerative diseases.

To stay on top of research updates and treatments, we recommend the FFB’s blog, Eye on the Cure.

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NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

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Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations.