La enfermedad de Best es una enfermedad retiniana hereditaria, la cual causa degeneración macular y pérdida de visión central, agudeza visual, y percepción de color.
Latest News
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Foundation Fighting Blindness Commits $6.5 Million for New Retinal Disease Research Grants
Press ReleasesNew grants include development of CRISPR/Cas9 gene-editing treatments, new disease models, and a retinal regeneration therapy
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COVID-19 Resources
Foundation NewsThe Foundation Fighting Blindness is closely monitoring the COVID-19 situation and its impact on the IRD community.
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Foundation Insights Forum – January 31, 2020
Insights ForumThe Foundation Fighting Blindness is pleased to provide an audio recording and full transcripts of the Insights Forum, our quarterly conference call providing updates to the inherited retinal disease community. The call took place on January 31, 2020.
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ProQR Therapeutics Teams Up with the Foundation Fighting Blindness and Blueprint Genetics to Support the My Retina Tracker® Program for People Living with Inherited Retinal Diseases
Press ReleasesMy Retina Tracker Program is the highest volume IRD genetic testing program in the U.S.
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Foundation Insights Forum – October 30, 2019
Insights ForumThe Foundation Fighting Blindness is pleased to provide an audio recording and full transcript of the Insights Forum, our quarterly conference call providing updates to the inherited retinal disease community. The call took place on October 30, 2019.
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Blueprint Genetics, InformedDNA and the Foundation Fighting Blindness launch an open access program for patients with inherited retinal disease in the United States
Press ReleasesThe program will offer patients with inherited retinal disease no-cost genetic testing and genetic counseling in the United States. Look for updated information on how to participate to be posted in mid-October, with program registration starting shortly thereafter.
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Foundation Fighting Blindness Endorses 'Eye Bonds' Legislation
Press ReleasesBipartisan Bill Will Stimulate Up to $1 Billion in New Funding for Blindness Research
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Foundation Fighting Blindness Urges Congress to Pass ‘Eye-Bonds’ Legislation
Press ReleasesBill Introduced in U.S. House Would Speed Up Cures for Blindness
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Foundation Fighting Blindness and CheckedUp® Partner to Educate Retinal-Disease Patients About Research, Resources, and Emerging Therapies During Doctor Visits
Press ReleasesThe Foundation Fighting Blindness (the Foundation) and CheckedUp have formed a collaborative partnership to deliver patient-friendly diagnostic and disease-management information to people with retinal diseases such as age-related macular degeneration, retinitis pigmentosa, and Stargardt disease during their visits to eye doctors.
Latest Research
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University of Wisconsin-Madison Awarded $29 Million NIH Common Fund Grant to Develop LCA16 and Best Disease Gene-Editing Therapies
Eye On the Cure Research NewsThe five-year grant will advance the emerging treatments toward clinical trials
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Opus Genetics Acquires Rights to Gene Therapies for BEST1 and RP (RHO)
Eye On the Cure Research NewsThe company plans to seek clinical trial authorization for the BEST1 gene therapy during the second half of 2023
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Genetic Testing for Inherited Retinal Diseases through the Foundation’s Open Access Program
Science EducationThe benefits of genetic testing for IRD patients, how to participate in the Foundation’s Open Access program, and what to expect from the genetic testing process.
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The Retina is a Proving Ground for a Broad Range of Neurological Therapies
Science EducationRetinal research paves the way for new treatments for the entire neurological system.
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Dr. Don Zack Honored for Research Contributions by ARVO and the Foundation Fighting Blindness
Eye On the Cure Research NewsDr. Zack is a member of the Foundation’s Scientific Advisory Board and chairs its Cellular Molecular Mechanisms of Disease study section.
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Eye Bonds Re-Introduced to New Congress: Potentially $1 Billion in Government-Backed Funding for Eye Research
Eye On the Cure Research NewsEye Bonds provide the opportunity to advance, and accelerate development for, more promising treatments into and through clinical trials and out to the people who need them.
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The Foundation Receives a $100,000 Research Grant from Sofia Sees Hope
Eye On the Cure Research NewsSofia Sees Hope, a nonprofit dedicated to finding treatments and cures for people with Leber congenital amaurosis (LCA) and other inherited retinal diseases (IRDs), has made a $100,000 donation to the Foundation Fighting Blindness to support therapy development and genetic testing.
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Pixium's PRIMA Bionic Vision System Restores Central Vision in Dry AMD Clinical Trial
Eye On the Cure Research NewsThe French bioelectronics company Pixium Vision has reported that its PRIMA bionic vision system has restored some central vision in patients with advanced dry age-related macular degeneration (AMD) participating in a clinical feasibility trial.
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Ophthotech to Boost Development of Gene Therapy for Best Disease
Eye On the Cure Research NewsOphthotech Corporation, a biopharmaceutical company focused on the development of therapies for orphan retinal diseases and age-related macular degeneration, has announced an evolving, commercial partnership with the University of Pennsylvania and University of Florida to develop a gene therapy for Best disease caused by BEST1 mutations.
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Foundation Invests $2.5 Million in Search for Elusive Retinal Disease Genes and Mutations
Eye On the Cure Research NewsSince 1989 genetic researchers, many funded by the Foundation, have identified approximately 270 genes linked to IRDs. In most cases, defects in a single gene can cause a retinal disease and vision loss.
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Ophthotech is Advancing an Impressive Portfolio of Cutting-Edge Therapies for Retinal Diseases
Eye On the Cure Research NewsThe company is taking on a multi-track strategy that includes retinal gene-therapy development, including delivery of over-sized genes and design of a two-step process of gene knockdown and replacement for autosomal dominant conditions.
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FFB Provides Four Career Development Awards to Up-and-Coming Clinical Researchers
Eye On the Cure Research NewsEach recipient will receive a total of $375,000 over five years to help build an independent research program in addition to their clinical practices.
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FFB Funding More than $2 Million in New Research
Eye On the Cure Research NewsSeventy scientists submitted requests for funding.
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Call to Action: Ask Congress to Support $1 Billion in Eye Research
Eye On the Cure Research NewsCall to Action: Ask Congress to Support $1 Billion in Eye Research
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Retinal Regeneration: Releasing Your Inner Salamander
Eye On the Cure Research NewsMany research groups from around the world are investigating ways to create new photoreceptors from stem cells for transplantation into the retina for vision restoration.
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ARVO 2018: Dr. Stephen Daiger Reports on the State of Genetic Testing for Inherited Retinal Diseases
Eye On the Cure Research NewsARVO 2018: Dr. Stephen Daiger Reports on the State of Genetic Testing for Inherited Retinal Diseases
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ARVO 2018: Dr. Steve Rose Reports on CRISPR/Cas9 for Inherited Retinal Diseases
Eye On the Cure Research NewsFFB’s own Dr. Steve Rose, chief scientific officer, reviews our commitment to funding and exploring CRISPR/Cas9 gene editing for inherited retinal disease.
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Best Disease Gene Therapy Advances Toward Clinical Trial
Eye On the Cure Research NewsUsing gene therapy, FFB-funded researchers at the University of Pennsylvania School of Veterinary Medicine (Penn Vet) and Perelman School of Medicine have reversed the disease process in a canine model of Best disease, an inherited form of macular degeneration that can lead to severe vision loss in humans
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Clinical Trial to Launch for System Combining Optogenetics and Eyewear
Eye On the Cure Research NewsThe French biotech GenSight Biologics has received regulatory authorization in the UK to launch the PIONEER Phase 1 \ 2 clinical trial for its GS030 system — a light-sensing gene therapy (optogenetics) coupled with eyewear, which enhances visual stimulation.
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Top Retinal Research Advances for 2017
Eye On the Cure Research NewsAn exciting year in fighting blindness.
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History Is Made: FDA Approves Spark's Vision-Restoring Gene Therapy
Eye On the Cure Research NewsKnown as LUXTURNA™ (voretigene neparvovec), the gene therapy restored vision in a clinical trial for people between the ages of 4 and 44 with Leber congenital amaurosis (LCA) caused by mutations in the gene RPE65.
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Stem-Cell Therapy Clinics Remain Inadequately Regulated, Pose Risk to Patients
Eye On the Cure Research NewsIf a clinic is charging for a stem-cell treatment or procedure for an IRD, it is probably not legit. The expense to the patient is a major red flag.
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FDA Committee Unanimously Recommends Approval for Spark's RPE65 Gene Therapy - Final Decision Due in January 2018
Eye On the Cure Research NewsAn advisory committee comprised of FDA-selected experts voted unanimously – 16 to 0 – to recommend approval.
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The Foundation's Investments Are Filling the Pipeline for Vision-Saving Therapies
Eye On the Cure Research NewsIn addition to funding promising biotech start-ups, the Foundation Fighting Blindness has played a critical role in developing research talent.
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Scientists Receive $25 Million to Develop a Vision-Restoring System that Connects to the Brain
Eye On the Cure Research NewsThe high-tech, vision-restoring system interfaces with the visual cortex, the back of the brain where visual input is processed to create the images we see.
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Foundation Fighting Blindness and 4D Molecular Therapeutics Partner to Boost Retinal Gene Therapy Development
Eye On the Cure Research NewsThe partnership will help companies and researchers quickly obtain and implement high-quality vectors for their retinal gene-therapy development efforts.
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FFB-Funded Scientists Report on Nine Promising Translational Research Efforts
Eye On the Cure Research NewsThe Foundation Fighting Blindness has taken the translational challenge head on by investing more than $75 million in therapy-development projects with strong clinical-trial potential through its Translational Research Acceleration Program (TRAP), which includes Gund-Harrington Scholar Awards.
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Forty-Four High-Impact Retinal-Research Efforts Highlighted at FFB-Casey Innovation Summit
Eye On the Cure Research NewsIn its fourth year, the meeting is becoming the world’s most comprehensive overview of the promising research underway for emerging IRD treatments.
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Dr. Eliot Berson, Pioneer in Vitamin A Therapy for Retinitis Pigmentosa, Passes Away
Eye On the Cure Research NewsDr. Berson dedicated himself to clinical care and vision-saving research for people with inherited retinal diseases for five decades.
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Unregulated Stem-Cell Therapy Causes Severe Vision Loss for Three Florida Women
Eye On the Cure Research News“…participation in a study for an emerging therapy that is not regulated by the FDA or another well-recognized regulatory agency like the European Medicines Agency in Europe, is fraught with dangers and can lead to unexpected serious consequences.”
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AGTC Leverages Funding from the Foundation to Move Promising Treatments into Clinical Trials
Eye On the Cure Research NewsCompany Builds on FFB’s Initial Investment to Garner $265 Million in Therapy Development Funding
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FFB-CRI Leads Effort to Identify Outcome Measures for Therapies in Clinical Trials
Eye On the Cure Research NewsImproved outcome measures will make clinical trials for degenerative retinal diseases — including age-related macular degeneration (AMD), the world’s leading cause of blindness in seniors, and inherited retinal conditions such as RP and Stargardt disease — less expensive to conduct and able to deliver more precise results.
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Building a Wiring Diagram for the Retina to Help Researchers Save and Restore Vision
Eye On the Cure Research NewsUnderstanding the pathways of the retinal neural network — and how they are rewired with aging and disease — is helpful in trying to save and restore vision.
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Nobel-Prize-Winning Stem-Cell Researcher Delivers Keynote at FFB-Funded Conference in Kyoto
Eye On the Cure Research NewsDr. Shinya Yamanka discussed his early clinical trial for iPSC-derived retinal pigment epithelial (RPE) cells for a 78-year-old woman with advanced wet age-related macular degeneration (AMD).
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Embrace Your Exceptions: A Mantra for Understanding Retinal-Disease Inheritance
Eye On the Cure Research NewsThe complex and elusive nature of these conditions can also extend to the way they are passed down in families, making diagnosis and prognosis quite challenging.
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Optogenetic Therapy Takes First Step Forward in Clinical Trial
Eye On the Cure Research NewsRetroSense’s optogenetic therapy is designed to restore vision to people who are completely blind from retinal degenerative diseases such as retinitis pigmentosa by bestowing light sensitivity to retinal ganglion cells, which survive after photoreceptors, the cells that make vision possible, are lost.
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Pixium Vision Reports Progress in Development of Two Advanced Bionic Retina Systems
Eye On the Cure Research NewsBoth approaches show strong, near-term potential for providing meaningful vision to people who are otherwise blind from retinal diseases such as retinitis pigmentosa and age-related macular degeneration (AMD).
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VISIONS 2016 - Dr. Richard Weleber Receives FFB's Highest Research Honor, Recognized in Touching Video
Eye On the Cure Research NewsDr. Weleber became the 10th recipient of the Foundation’s highest honor, named after FFB co-founder Lulie Gund, during the opening lunch of the VISIONS 2016 conference.
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VISIONS 2016 — Dr. Shomi Bhattacharya Wins FFB Award for Gaining an Understanding of Variations in Vision Loss
Eye On the Cure Research NewsAt VISIONS 2016, FFB’s national conference, the Foundation honored him with its Ed Gollob Board of Directors Award for breakthrough research conducted within the past year.
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A Steady Hand in Saving Vision
Eye On the Cure Research NewsSubretinal injection is the most common form of delivery for gene therapies currently in clinical trials.
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A Leap Forward: Spark Therapeutics Seeks FDA Approval for its Vision-Restoring Gene Therapy
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VISIONS 2015 — Dr. José Sahel Receives Foundation's Most Prestigious Research Honor
Eye On the Cure Research NewsFor those of us supporting the drive for vision-saving treatments and cures, he’s exactly the type of person we want on our team.
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VISIONS 2015 — Dr. Shannon Boye Receives FFB Award for Excellence in Gene-Therapy Research
Eye On the Cure Research NewsDr. Boye received the Foundation’s Board of Director’s Award, which was presented at VISIONS 2015, FFB’s annual conference, for achievements in retinal research.
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ARVO 2015 Highlight: The National Eye Institute Invests $4 Million in Audacious-Goals Research
Eye On the Cure Research NewsThe mission of the program—to regenerate the neurons and neural connections in the eye and visual system—is synonymous with the Foundation’s mission to eradicate retinal diseases.
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ARVO 2015 Highlight: A Cut-and-Paste Approach to Fixing Retinal-Disease Genes
Eye On the Cure Research NewsOne of the hot topics at ARVO this year is a rapidly advancing gene-therapy approach called clustered regularly interspaced short palindromic repeats, or CRISPR.
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How Evolution is Leading to Gene Therapies for More Retinal Diseases
Eye On the Cure Research NewsAn innovative genetic-engineering approach called “directed evolution” to find optimal gene-delivery systems based on adeno-associated viruses (AAVs).
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VISIONS 2014 — My Retina Tracker: Track Your Vision and Drive the Research
Eye On the Cure Research NewsThe powerful and secure system enables patients to keep track of their clinical care and vision changes. At the same time, it enables scientists to search the “de-identified” (i.e., anonymous) patient information to study conditions and identify targets for treatments, preventions and cures.
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VISIONS 2014 — The Multi-Talented Dr. Shannon Boye
Eye On the Cure Research NewsDr. Boye and her research team received a $900,000 grant for a gene therapy project targeting Leber congenital amaurosis.
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ARVO 2014: European Collaboration Developing Cross-Cutting, Vision-Saving Therapies
Eye On the Cure Research NewsSimply put, they’re creating therapies that can save vision in as many people as possible, independent of the genetic cause of disease.
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Total Blindness and Non-24 Sleep Disorder
Eye On the Cure Research NewsNon-24 is a very rare condition affecting many (but not all) people who are totally blind and have absolutely no light perception. Their circadian clocks become out of sync as a result.
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Nouvelle Lumière: French Bionic Retina in a Human Study
Eye On the Cure Research NewsThe French retinal implant developer Pixium quietly launched a clinical trial for its Intelligent Retinal Implant System 1 (IRIS1) in France, Austria and Germany.
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Researchers Move Closer to Getting a Complete Genetic Picture of the Retina
Eye On the Cure Research NewsIdentifying the genes and proteins that play a major role in retinal health and vision is an important step in finding preventions and cures for degenerative diseases.
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Patient Registries Help Advance Research for Rare Diseases
Eye On the Cure Research NewsMany registries enable patients to collect and track information about their health, so they can take an active role in managing their care.
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Grow Your Own: Harnessing Muller Glia for Retinal Regeneration
Eye On the Cure Research NewsThere’s hope for retinal regeneration for humans, thanks to Foundation-funded researcher Dr. Thomas Reh, who is investigating how to derive new photoreceptors from retinal cells called Muller glia.
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Retinal Regeneration is Major Focus of NEI's Audacious Goal
Eye On the Cure Research NewsThe goal, “to regenerate the neurons and neural connections in the eye and visual system,” is exactly what people with retinal diseases need to save and restore their vision.
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Researcher Revolutionized Fight Against Blindness and Cancer
Eye On the Cure Research NewsA profile on Dr. Robert Langer, a medical researcher who has received dozens of awards, accolades and honorary degrees, including, recently, FFB’s Visionary Award.
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Staying Alive: Saving Retinal Cells to Preserve Vision
Science EducationSometimes, saving vision simply comes down to keeping retinal cells alive, or at least slowing their degeneration.
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History in the Making
Eye On the Cure Research NewsMore good news about treatments and technological advances for restoring vision for people with retinal diseases.
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Have I Got a Cure for You! Debunking an Alleged Treatment on the Internet
Eye On the Cure Research NewsHow do you know if a treatment is legit? There should be preclinical and clinical trial data published in a peer-reviewed journal on research for the treatment.
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Related Resources
Persevering to Success with the Support of Family, Friends, and Faith
A story about living with retinitis pigmentosa.
