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Displaying 41–50 of 1154 results
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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.
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More Than What You See: Navigating Vision Loss and Mental Health
Beacon Stories WellnessAt 25, Austin experienced sudden vision changes that led to a diagnosis of Usher syndrome type 2A, reshaping how he moved through the world and how he saw his future. The emotional impact of this vision loss affected his mental health, leading to isolation before he began to openly process his experience and seek connection. Today, he uses his journey to inspire Rare Perspective Co., creating space for more open conversations and understanding around vision loss.
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Foundation News
The award recognizes Dr. Pierce’s contributions to inherited retinal disease research, including work that led to the first FDA-approved gene therapy for an inherited disease and leadership of the world’s first in vivo CRISPR genome-editing study in humans.
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Meet Teddy: A Guide Dog Helping Navigate Life with Vision Loss
Invisible DisabilityIn honor of International Guide Dog Day, we’re spotlighting the life-changing partnership between people living with vision loss and their guide dogs, through the eyes of one very special dog.
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In the Press
Four-year cohort will enroll participants with inherited retinal diseases caused by mutations in the RHO gene. Study is intended to deepen understanding of disease progression and inform future clinical trial design in rhodopsin-associated retinal disease.
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Atsena Therapeutics Advances to Pivotal Phase 3 Trial for X-Linked Retinoschisis
Research NewsData monitoring committee recommends proceeding with registration-enabling study for ATSN-201
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Foundation News
The gathering will be held June 12–13 and will convene global communities impacted by blinding diseases, alongside researchers, clinicians, patient advocates, and industry partners to foster collaboration, innovation, and hope.
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MeiraGTx Acquires XLRP Gene Therapy Bota-Vec, Moves Toward Regulatory Filing
Research NewsMeiraGTx has acquired bota-vec, a gene therapy for X-linked retinitis pigmentosa (XLRP), and plans to file for regulatory approval in the U.S., Europe, and Japan, with a potential launch in 2027.
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The Foundation Fighting Blindness, together with the Nixon Visions Foundation, invites you to join a free, in-person workshop bringing together individuals and families affected by PRPH2 and associated retinal diseases, along with researchers, physicians, and industry partners.
