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Additional Resources

For People With Stargardt Disease For Parents and Caregivers Resources Outside the US

Resources

Make connections and strengthen your support

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.

For People with Stargardt Disease

Foundation Fighting Blindness

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.

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Prevent Blindness

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.

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American Macular Degeneration Foundation

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.

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National Federation of the Blind

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.

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Losing Sight, Finding Hope:
Living with Macular Degeneration

This documentary, sponsored by the AMDF, features five people living with macular degeneration.

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MyMacDLife

This award-winning podcast includes stories and information for the Age-related Macular Degeneration (AMD) community.

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The Blind Life

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.

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The Blind Life podcast

This informative podcast focuses on assistive technology.

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The mental stress of not knowing exactly how bad it will get is hard to deal with.

— 36-year-old with Stargardt disease

For Parents and Caregivers

Living Well With Low Vision

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.

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BrightFocus Foundation

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.

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American Foundation for the Blind

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.

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Stargardt's Summit

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.

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American Academy of Ophthalmology

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.

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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.

Resources outside the US

Retina International

By fostering research and ensuring universal access to diagnosis, treatment, and care, Retina International supports people affected by retinal degenerative diseases.

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Stargardt's Connected

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.

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Canadian Council of the Blind

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.

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Fighting Blindness Canada

Fighting Blindness Canada helps move critical vision research forward, offering opportunities for individuals to share their story, fundraise, and join a patient registry.

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Find a Specialist or Clinical Trial

For an Inherited Retinal Disease (IRD) specialist (provider with specialized knowledge and experience in treating retinal diseases):

Visit this directory of low vision specialists provided by the Foundation Fighting Blindness.

For a retina specialist (a type of IRD specialist):

Find a professional near you with this locator provided by the American Society of Retina Specialists.

For an ophthalmologist (eye doctor trained to diagnose and treat all eye conditions):

Search for an ophthalmologist by specialty and area of the country using this form from the American Academy of Ophthalmology.

For a doctor of optometry (OD) to perform a comprehensive eye exam and detect signs of eye-related issues:

For an OD recommended by the American Optometric Association, locate a physician or practice near you here.

For Stargardt disease clinical trials:

Explore all studies currently underway concerning Stargardt disease at clinicaltrials.gov, hosted by the National Library of Medicine.

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