Organizations that can help
Knowledge Is HopeSupport groups, condition organizations, blindness agencies, guide dog schools, assistive technology and genetic counseling services, in one searchable directory. Every listing links to the organization's own site. Pick your condition to see the organizations that work on it, plus the ones that serve everyone.
At a glance
- Organizations listed
- 77Across 6 categories.
- Condition-specific listings
- 52 conditions have their ownChoose yours in the finder.
- What every listing has
- A link to the organization's own sitePlus a phone number and location where we have them.
- Last checked
- Links are checked by us; tell us if one is broken.
Find an organization
Search by name or keyword, choose a condition, or pick a category.
Showing 77 of 77 organizations
Condition organizations
- Macular Society
UK charity supporting people with macular conditions including adult-onset vitelliform macular dystrophy and bestrophinopathies. Provides helpline, counseling, and research funding.
- Usher Syndrome Coalition
The most comprehensive resource for the global Usher syndrome community, bridging the gap between researchers and families. Offers USH Connections Conference, Ambassador program, and family resources.
- Bardet-Biedl Syndrome Foundation
Builds community support for individuals and families, provides information about BBS, and promotes science and research to improve lives.
- Choroideremia Research Foundation (CureCHM)
The largest organization in the world focused on finding a cure for choroideremia. Funds gene therapy research and clinical trials.
- Foundation Fighting Blindness
The leading nonprofit dedicated to advancing research for treatments and cures for all inherited retinal diseases. Offers My Retina Tracker genetic testing and Eye2Eye peer support.
- Achroma Corp
Nonprofit dedicated to raising awareness and funding research for a cure for achromatopsia (ACHM). Founded by parents of a child with the condition.
- Joubert Syndrome & Related Disorders Foundation (JSRDF)
International network providing Connection, Awareness, Research, and Education (C.A.R.E.) for families affected by Joubert syndrome.
- LHON.org (Vision Hope Now)
Dedicated to prevention, support, and finding a cure for Leber Hereditary Optic Neuropathy. Connects patients with researchers and clinical trials.
- Norrie Disease Association
Voluntary non-profit providing support, information, and leadership to individuals with Norrie disease and their families worldwide.
- American Macular Degeneration Foundation
Supports research and provides resources for macular diseases including Best disease (vitelliform macular dystrophy).
- A Race Against Blindness
Non-profit funding sight-saving research for children with inherited retinal diseases. Hosts fundraisers and provides educational resources through the IRD Education Hub.
- Alagille Syndrome Alliance (ALGSA)
The leading nonprofit advocacy and support organization for people affected by Alagille syndrome. Provides family support, funds research grants, and connects patients with specialists worldwide.
- Alstrom Syndrome International (ASI)
Global 501(c)(3) nonprofit providing support, information, and coordination worldwide to families and professionals treating Alstrom Syndrome. Maintains the largest clinical database for the condition.
- Autosomal Dominant Optic Atrophy Association (ADOAA)
Nonprofit created to raise awareness about ADOA and fund medical research to find a cure. Connects patients, provides education about OPA1 mutations, and tracks clinical trials.
- BDSRA Foundation (Batten Disease Support & Research Association)
Dedicated to funding research for treatments and cures for Batten disease (neuronal ceroid lipofuscinoses). Provides family support services, education, and advocacy.
- BCM Families Foundation
Nonprofit dedicated to eradicating Blue Cone Monochromacy by supporting biomedical research. Maintains the BCM Patient Registry and connects families worldwide for support and clinical trial awareness.
- Share & Care Cockayne Syndrome Network
Nonprofit supporting Cockayne syndrome and Trichothiodystrophy patients with medical resources, financial assistance, and family connections for over 40 years. Provides information for families and professionals.
- Cohen Syndrome Research Foundation
Nonprofit dedicated to improving lives of Cohen Syndrome individuals and their families by supporting and advancing research into VPS13B gene mutations and potential therapies.
- BrightFocus Foundation
Funds groundbreaking research for macular degeneration and related conditions including dominant drusen (Doyne honeycomb retinal dystrophy). Provides patient education and research updates.
- Metabolic Support UK
Leading organization for inherited metabolic disorders including gyrate atrophy (ornithine aminotransferase deficiency). Provides dietary guidance, family support, and connects patients with metabolic specialists.
- Global Foundation for Peroxisomal Disorders (GFPD)
Improves lives of individuals with peroxisomal disorders (including Heimler syndrome, the mildest form of Zellweger spectrum) by funding research, championing scientific collaboration, and empowering families.
- United Mitochondrial Disease Foundation (UMDF)
Leading nonprofit for mitochondrial diseases including Kearns-Sayre Syndrome. Provides patient support, funds research, hosts symposia, and connects families with mitochondrial disease specialists.
- National Kidney Foundation
Supports patients with kidney diseases including nephronophthisis (the renal component of Senior-Loken Syndrome). Provides patient education, advocacy, and connects families with nephrologists.
- Marfan Foundation (Stickler Connect)
Welcomes the Stickler syndrome community (formerly Stickler Involved People) to the Foundation family. Provides support groups, educational resources, and connects patients with connective tissue disorder specialists.
- The Snow Foundation
The collective voice for Wolfram syndrome patients, working towards a cure. Funds research, supports clinical trials at Washington University, and connects families with the international Wolfram community.
- Foundation Fighting Blindness — Stargardt disease
Dedicated space for the Stargardt community offering year-round education, connection, and research updates specific to Stargardt disease.
- Hope in Focus
501(c)(3) nonprofit patient advocacy organization transforming lives of those affected by blindness caused by rare inherited retinal diseases.
- Retina International
Global patient-led NGO connecting people with rare retinal dystrophies to research updates, clinical trials, and national support organizations worldwide.
- Stickler Syndrome Support Group (UK)
UK voluntary health organization dedicated to raising awareness of Stickler syndrome. Provides information, family support, and connects patients with ophthalmologists experienced in vitreoretinal management.
- Cohen Syndrome Association
Founded by parents to advocate, research, and educate about Cohen syndrome. Hosts family gatherings and connects families with the DDC Clinic for specialized care.
- The Lily Foundation
UK charity fighting mitochondrial disease through research funding and family support. Provides information about MIDD and connects patients with mitochondrial disease centers.
- Alstrom Syndrome UK (ASUK)
Award-winning charity providing personalized family support, research initiatives, and clinical coordination for individuals with Alstrom Syndrome and their families.
- Be a Tiger Foundation
501(c)(3) nonprofit directly funding and supporting clinical research aimed to treat and cure Wolfram Syndrome. Named in honor of patients fighting this progressive neurodegenerative condition.
- Batten Disease Global Research Initiative
International consortium of patient advocacy organizations advancing research for all forms of Batten disease. Coordinates global clinical trials and research collaboration.
- Zellweger Spectrum Disorder Alliance
Provides patient and caregiver resources for Zellweger Spectrum Disorders. Connects families with research opportunities, clinical trials, and support networks.
- BCM Registry
Online patient registry for Blue Cone Monochromacy created by BCM Families Foundation. Helps researchers identify eligible patients for gene therapy clinical trials and natural history studies.
- United Leukodystrophy Foundation
Provides support and resources for leukodystrophies and peroxisomal disorders including Refsum disease. Offers family networking, education, and research advocacy.
- Amy and Friends (Cockayne Syndrome Support)
UK charity helping children and families with Cockayne syndrome gain diagnosis, providing information for medical papers, and supporting research into this DNA repair disorder.
- Children's Liver Disease Foundation
UK charity supporting children and families affected by liver disease including Alagille syndrome. Provides information, emotional support, and funds research.
- Colour Blind Awareness
Organization providing information and support for people with color vision deficiencies including inherited tritanopia (blue-yellow color blindness). Offers educational resources and workplace guidance.
- NORD — National Organization for Rare Disorders
Umbrella organization with a database of patient organizations for rare diseases. Provides advocacy, education, and research support.
- Clinical Registry Investigating Bardet-Biedl Syndrome (CRIBBS)
Patient registry connecting BBS families with researchers and clinical trials. Helps advance understanding of BBS natural history.
- Carroll Center for the Blind — Stargardt's Summit
Hosts annual Stargardt's Summit bringing together patients, families, and researchers. Provides rehabilitation and training services.
- Helen Keller National Center
Provides services, technical assistance, and training for individuals who are deafblind, including those with Usher syndrome.
- National Center on Deaf-Blindness
Works with state deaf-blind projects to improve educational results and quality of life for children who are deaf-blind, including Usher syndrome.
- Retina UK (formerly RP Fighting Blindness)
UK charity supporting people affected by inherited retinal dystrophies through research funding, information, and support services.
Genetic counseling and testing
- My Retina Tracker — Foundation Fighting Blindness
Free genetic testing registry for inherited retinal diseases. Connects patients with clinical trials and research opportunities based on their genetic profile.
- Genome Medical
Telehealth genetic counseling service with counselors experienced in inherited retinal diseases. Helps interpret genetic test results.
- National Society of Genetic Counselors — Find a Counselor
Directory to find a board-certified genetic counselor in your area who specializes in eye conditions and inherited diseases.
- Eyes On Genes
Educational resource about genetic testing for inherited retinal diseases. Provides information about how IRDs happen and what genetic testing can reveal.
- InformedDNA
Provides genetic counseling services and support for understanding inherited conditions, including retinal diseases.
Support groups and peer communities
- FFB Eye2Eye Peer Support Program
Free phone-based peer support connecting people with inherited retinal diseases to trained volunteers who share similar experiences.
- VisionAware Peer Advisors
Network of trained peer advisors who have personal experience with vision loss and can provide emotional support and practical guidance.
- Hadley Discussion Groups
Free virtual discussion groups for adults with vision loss covering topics like adjusting to vision loss, technology, and daily living.
- ACB Community Groups
American Council of the Blind special interest groups and state affiliates providing local community connections for people with vision loss.
- NFB State Affiliates
National Federation of the Blind local chapters in every state providing community, mentorship, and support for blind individuals.
Blindness and low vision organizations
- National Federation of the Blind
The largest US organization of blind people. Provides advocacy, programs, scholarships, technology training, and community support.
- American Council of the Blind
National membership organization advocating for the civil rights and independence of people who are blind or have low vision.
- American Foundation for the Blind
Expands possibilities for people with vision loss through research, advocacy, and removal of barriers to technology.
- VisionAware
Self-help resource from the American Printing House providing practical information for adults adjusting to vision loss, including daily living tips and emotional support.
- Hadley
Free personalized learning, support groups, and expert resources for adults 55+ living with vision loss to regain independence.
- Lighthouse Guild
Provides healthcare, rehabilitation, education, and professional training for people with vision impairment.
- Prevent Blindness
Leading volunteer eye health and safety organization dedicated to fighting blindness and saving sight through education and advocacy.
- Perkins School for the Blind
World leader in education services for children and young adults who are blind, visually impaired, or have multiple disabilities.
- Be My Eyes
Free app connecting blind and low-vision users with sighted volunteers for visual assistance through live video calls and AI.
Guide dog programs
- Guide Dogs for the Blind
Provides guide dogs and training free of charge to people who are blind or have low vision throughout the US and Canada.
- Guiding Eyes for the Blind
Provides guide dogs to people who are blind or visually impaired. All services including training, travel, and room/board are free.
- Guide Dog Foundation for the Blind
Trains and provides guide dogs and service dogs at no cost to people who are blind or have vision loss.
- Guide Dogs of America
Breeds, raises, and trains guide dogs for those who are blind or visually impaired, provided free of charge.
- Dogs Inc (formerly Southeastern Guide Dogs)
Provides guide dogs and service dogs at no cost. Offers programs for veterans and children.
- Leader Dogs for the Blind
Provides guide dogs, orientation and mobility training, and summer camp for teens — all at no cost.
- Fidelco Guide Dog Foundation
Breeds and trains German Shepherd guide dogs, providing them free of charge with in-community placement training.
Assistive technology and rehabilitation
- American Printing House for the Blind
World's largest company devoted to researching, developing, and manufacturing accessible educational and daily living products for people who are blind or low vision.
- National Library Service for the Blind and Print Disabled
Free braille and audio materials delivered to eligible borrowers through a network of cooperating libraries.
- Bookshare
World's largest accessible ebook library for people with reading barriers including blindness and low vision. Over 1 million titles.
- Carroll Center for the Blind
Provides rehabilitation, technology training, and adjustment-to-blindness programs for adults and teens with vision loss.
- VISIONS/Services for the Blind
Provides rehabilitation, social services, and community programs for people of all ages who are blind or visually impaired.
About this directory
We list organizations we would send our own family to. Each entry carries a description in our words, the organization's own web address, and where we have them a phone number and location. Being listed is not an endorsement of any medical claim an organization makes. Know one we are missing, or spot a dead link? Email info@araceagainstblindness.org with the subject "Resource suggestion".
Medical Disclaimer
This information is for educational purposes only and does not constitute medical advice. It is not a substitute for seeking medical opinions, nor an endorsement of any treatments, research, or organizations. Trial information is sourced from ClinicalTrials.gov and public press releases. Genetic testing and clinical management should be performed by qualified healthcare professionals, including ophthalmologists and genetic counselors.