Resources
Whether you're living with Stargardt disease or know someone who is, knowing where to turn for information is a helpful tool.
If you or someone you know is concerned about changes in vision, find an eye care professional near you through the links below. You can also explore a curated list of established organizations below to learn more about managing the disease, find inspiring stories from the community, and identify local opportunities to get involved.
A helpful resource for people affected by Stargardt disease, Foundation Fighting Blindness offers online educational information and community events through local chapters. It is also the world’s leading private funder of retinal disease research, including for Stargardt disease.
Prevent Blindness, with a mission to prevent blindness and preserve sight, works with public and private sector partners to help children learn, adults work, and seniors maintain quality of life and independence while living with vision loss. It also advocates for public policy that emphasizes early detection, equitable access to eye care, and advances in research and public health that supports healthy vision.
While supporting research to prevent, treat, and cure Stargardt disease, the American Macular Degeneration Foundation (AMDF) offers helpful information for living and thriving with AMD.
As the oldest and largest nationwide organization of blind Americans, the National Federation of the Blind has local branches in every state to provide information, support, mentoring, and to defend the rights of blind Americans.
This documentary, sponsored by the AMDF, features five people living with macular degeneration.
This award-winning podcast includes stories and information for the Age-related Macular Degeneration (AMD) community.
A video series from a visually impaired perspective, The Blind Life includes assistive technology reviews and tips and tricks for navigating life with low vision.
The mental stress of not knowing exactly how bad it will get is hard to deal with.
Offering helpful tips and resources for caregivers, Living Well With Low Vision is dedicated to helping people improve the quality of their daily lives with low vision. Resources for both people with Stargardt and their healthcare professionals are available.
As an organization that funds innovative research to treat macular degeneration and other diseases affecting sight and mind, BrightFocus offers expert information for caregivers and their loved ones.
With a mission to create a world of no limits for people who are blind or visually impaired, the American Foundation for the Blind (AFB) offers a helpful resource for parents—FamilyConnect.
This event is designed to share patient perspectives, the latest research updates, and low vision resources and technology. Recorded sessions from the 2024 event are available at the link below.
With a mission to protect sight and empower lives, the American Academy of Ophthalmology is the world’s largest association of eye physicians and surgeons. The organization serves as an advocate for the public, offering tips and information about eye health and care services directly from ophthalmologists.
Note: The resources on this page are meant to be informational only and should not replace medical advice. Always talk to your healthcare provider about any medical decisions, including how to manage the daily symptoms of Stargardt disease. Alkeus Pharmaceuticals, Inc. is not responsible for the content of any third-party sites or resources, and cannot guarantee the quality of information or support provided.
By fostering research and ensuring universal access to diagnosis, treatment, and care, Retina International supports people affected by retinal degenerative diseases.
Created in response to the lack of support for and awareness of Stargardt disease, Stargardt's Connected is dedicated to raising awareness, giving support, and seeking a cure.
As The Voice of the Blind in Canada™, The Canadian Council of the Blind (CCB) includes chapters across the nation, engaging in social and recreational activities that support local interests of members.
Fighting Blindness Canada is here to support individuals affected by Stargardt disease. We provide health information, community events and support and are Canada's largest charitable funder of vision research.
Visit this directory of low vision specialists provided by the Foundation Fighting Blindness.
Find a professional near you with this locator provided by the American Society of Retina Specialists.
Search for an ophthalmologist by specialty and area of the country using this form from the American Academy of Ophthalmology.
For an OD recommended by the American Optometric Association, locate a physician or practice near you here.
Explore all studies currently underway concerning Stargardt disease at clinicaltrials.gov, hosted by the National Library of Medicine.
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Alkeus Pharmaceuticals, Inc. is not responsible for the content of third-party websites. By selecting “Continue,” you are confirming your understanding that privacy policies and terms of use on any third-party site may differ from those of Alkeus Pharmaceuticals, Inc.
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