Kuruluşlar ve Kaynaklar
Dünya genelinde LCA araştırması, hasta savunuculuğu, genetik kayıtlar ve mesleki gelişimi destekleyen kuruluşların kapsamlı rehberi.
Research Funding
8 kuruluş
The largest private funder of retinal disease research, supporting development of treatments and cures for inherited retinal degenerations including LCA. Offers free genetic testing through MyRetinaTracker.
The venture philanthropy arm of the Foundation Fighting Blindness, investing in companies developing treatments for inherited retinal diseases.
Funds research into retinal diseases to prevent, treat, and restore vision loss caused by macular degeneration, diabetic retinopathy, and inherited retinal conditions.
Ireland
Ireland's leading charity funding research into treatments and cures for inherited retinal conditions, providing patient support and genetic services.
United Kingdom
UK charity funding research into inherited retinal dystrophies and providing information and support services to affected individuals and families.
Germany
Germany's largest patient organization for people with retinal degenerations, funding research and providing support for inherited retinal disease patients.
Specifically focused on funding research into CRB1-related retinal dystrophies, one of the gene mutations causing LCA (LCA8).
Patient advocacy organization (formerly Sofia Sees Hope) providing support, education, and research funding for LCA and rare inherited retinal diseases. Actively advancing RDH12 (LCA13) research, hosting the Global RDH12 Scientific Conference.
Patient Support
8 kuruluş
Global (Switzerland)
Global umbrella organization representing patient groups for inherited retinal dystrophies across dozens of countries, coordinating international advocacy and research efforts.
USA
National Organization for Rare Disorders — US advocacy organization providing education, advocacy, and patient assistance programs for rare diseases including LCA.
United Kingdom
Royal National Institute of Blind People — UK's leading sight loss charity offering practical support, campaigning for accessibility, and funding eye research.
Online resource for parents of children who are blind or visually impaired, offering guidance on early development, education, and daily living skills.
Provides healthcare, rehabilitation, and social services for people who are blind or visually impaired, including clinical programs and research.
National nonprofit expanding possibilities for people with vision loss through advocacy, technology, research, and public policy initiatives.
World-renowned educational institution serving children and adults who are blind, deafblind, or visually impaired, offering programs and global partnerships.
Resource hub for parents of children with visual impairments, providing age-specific guidance, community connections, and expert advice.
Professional
3 kuruluş
The world's largest association of eye physicians and surgeons, setting clinical practice standards and providing education on ophthalmic conditions.
USA (international)
Association for Research in Vision and Ophthalmology — the largest eye and vision research organization in the world, fostering research collaboration.
Europe
European Society of Retina Specialists — advancing knowledge in medical and surgical retina through congresses, research, and clinical guidelines.
Registry & Info
6 kuruluş
USA (global access)
Free, global patient registry for inherited retinal diseases run by the Foundation Fighting Blindness. Connects patients with clinical trials and research opportunities.
International
Patient-friendly information portal for genetic eye diseases, providing accessible explanations of conditions, genes, and available treatments.
Europe (France)
European reference portal for rare diseases including LCA, providing disease descriptions, expert resources, and clinical trial listings.
USA (Johns Hopkins)
Online Mendelian Inheritance in Man — comprehensive catalog of human genes and genetic disorders, documenting all known LCA subtypes and their gene mutations.
USA (NIH/NCBI)
Expert-authored, peer-reviewed disease descriptions focused on genetic conditions, including detailed clinical summaries and genetic testing guidance for LCA.
USA (global scope)
US government database of clinical studies worldwide, listing active and completed gene therapy trials for LCA subtypes.
Government
2 kuruluş
Part of the US National Institutes of Health, NEI is the primary federal agency for vision research, funding major LCA gene therapy studies and basic science.
Europe (Amsterdam)
EU agency responsible for evaluating and supervising medicines. Approved Luxturna (voretigene neparvovec) for RPE65-mediated inherited retinal dystrophy in Europe (2018).