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Displaying 1–10 of 257 diseases 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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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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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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Seen at Last: How Love Is Blind Gave Madison a Platform for RP
Beacon StoriesFrom reality TV to real-world impact, Madison Maidenberg turned her Love Is Blind spotlight into a platform for blinding diseases. As a contestant living with retinitis pigmentosa, she’s challenging misconceptions about blindness and becoming a powerful voice for the blind and low vision community.
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Opus Genetics Secures $155 Million Financing to Accelerate Gene Therapy Pipeline
Research NewsStrategic funding extends cash runway through 2029 and advances multiple inherited retinal disease programs
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A Legacy of Strength, Adaptability, and Generosity: Richard and Elizabeth Kamis
Beacon StoriesRichard and Elizabeth built a life rooted in resilience, service, and generosity, with Richard’s experience living with retinitis pigmentosa shaping their shared purpose. From breaking barriers in education to helping others, their impact continues to help advance research for generations to come.
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VeonGen Reports Promising Clinical Progress for Stargardt Disease Gene Therapy
Research NewsVG801 shows sustained vision improvements through 12 months with favorable safety profile
