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Resource for Inherited Retinal Diseases & Families

Foundation Fighting Blindness is a leading resource for patients with inherited retinal diseases. They offer clinical trials, patient registries, genetic testing, and support for families. Connect with the foundation to access valuable information and resources.

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Resource for Inherited Retinal Diseases & Families

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  1. A Resource for Patients with Inherited Retinal Diseases and their Families August 17, 2019 Michelle Glaze Associate Director, Professional Outreach

  2. Foundation Fighting Blindness Overview • Established: 1971 • Mission: Drive research to find preventions, treatments and cures for blinding retinal diseases • Funding: Largest private funder of retinal degenerative disease research in the world; raised $750 million • Research: Lab, translational, clinical, natural history, patient registry and genetic testing • Retinal diseases: Retinitis pigmentosa, Stargardt disease, Usher syndrome, Leber congenital amaurosis, dry AMD and others

  3. Foundation Fighting Blindness Clinical Trials 36 Clinical Trials Underway Foundation-funded research attracting commercial investments Foundation’s portfolio: 75 projects (global)

  4. Foundation Fighting Blindness LUXTURNA: Spark’s RPE65 (LCA & RP) Gene Therapy First FDA-approved gene therapy for the eye or an inherited disease. Patients receiving commercial therapy.

  5. Foundation Fighting Blindness My Retina Tracker Patient Registry • Global, Free, Secure, Easy-to-Use • Patient-Controlled • Researchers use for clinical trial recruitment • 12,000+ active registrants • 5,000+ requests for free genetic testing • www.MyRetinaTracker.org

  6. Foundation Fighting Blindness Genetic Testing Study – genetic testing and counseling for IRD patients registered on My Retina Tracker To Participate: • Register in My Retina Tracker • Go to FAQs at www.MyRetinaTracker.org • Download information packet • Read the information packet  • Participating physicians are listed in packet • Contact participating physician

  7. Foundation Fighting Blindness Resources • Local Chapter – a community • Information on Diseases and Emerging Therapies • My Retina Tracker Patient Registry • Free Genetic Testing (MRT Registrants) • Events – VisionWalk, chapter meetings, vision seminars, webinars, teleconferences and fundraisers

  8. Foundation Fighting Blindness Connecting with the Foundation • Website: www.fightingblindness.org • Informational Brochures • Patient Call In: 888-394-3937 • InFocus Newsletter • Eye on the Cure Research News • Insights Forum Call (Quarterly) • Research Update Call (Biannually) • Social Media: Facebook, Instagram, LinkedIn, Twitter

  9. Contact Information Michelle Glaze Email: mglaze@fightingblindness.org Cell: 251-654-9758

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