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Displaying 1–10 of 269 diseases results
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FDA approves Lumvoa, a new treatment for thyroid eye disease
Research NewsApproval gives patients an additional option to manage TED symptoms
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Living Life Through My Eyes: My Journey with XLRS
Invisible DisabilityThere are moments when I wish I could see the world the way everyone else does. But I’ve realized that focusing on what I’ve lost only takes away from what I still have. XLRS may affect my eyesight, but it doesn’t define who I am.
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Belite Bio Submits New Drug Application to FDA for its Stargardt Treatment
Research NewsTinlarebant becomes first Stargardt treatment submitted to FDA for approval
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Invisible Disability
Life is inherently uncertain, but what happens if we embrace that? Trust yourself and your intuition. My strength is for me to define, no one else.
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Beacon Stories
Tamar Bresge is an artist, writer, and educator living with retinitis pigmentosa (RP) due to Usher syndrome. She reflects on her vision loss journey from hiding her diagnosis to embracing it as an inseparable part of her identity — and how her work in art, writing, and teaching has become a way to create the visibility and connection she once needed herself.
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Potential Oral Stargardt Treatment Advances to Phase 3 Clinical Trial
Research NewsPromising oral treatment moves closer for Stargardt patients.
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A Race Against Blindness Commits $1 Million to Advance Gene-Agnostic Therapeutic Approaches
Foundation NewsThe commitment directs $775,000 to the RD Fund, to be matched dollar for dollar, and $225,000 to a Foundation Fighting Blindness research award, advancing approaches that can help patients regardless of the gene causing their retinal disease
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Taking the Stage for Stargardt
Beacon StoriesDiagnosed with Stargardt disease at age nine, Havah Fleisner spent years feeling isolated by her vision loss before discovering confidence through pageantry and advocacy. Now, as Miss Northern Lights Teen 2026, she’s using her platform to create community, raise awareness, and inspire others living with blinding diseases.
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Research News
2020 Llura Liggett Gund Award recipient honored for pioneering gene therapy that transformed vision research.
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Two Twins, One Rare Diagnosis, and a Family Holding on to Hope
Invisible DisabilityRaising two twins with the same rare condition comes with challenges that many people cannot see. Everyday tasks often require extra patience, planning, and support. Our twins may experience the world differently, but they face it with courage every day.
