Newly diagnosed? Connect with the Foundation Fighting Blindness for education, managing your condition, and finding support.

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Newly Diagnosed?

The diagnosis of a blinding disease is often overwhelming. But if you or a loved one has been recently diagnosed with an inherited retinal disease or age-related macular degeneration (AMD), getting connected to the Foundation Fighting Blindness is a great way to get educated, better manage your condition, and find support.

Here are a few helpful steps.
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Newly Diagnosed

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Information for Newly Diagnosed Patients and their Loved Ones

The diagnosis of a blinding retinal disease is often overwhelming. But if you or a loved one has been recently diagnosed with an inherited retinal disease or age-related macular degeneration (AMD), getting connected to the Foundation Fighting Blindness is a great way to get educated, better manage your condition, and find support.

Here are some helpful steps you can take to get on a positive path moving forward:

1. Learn about your disease

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The Foundation’s website, FightingBlindness.org, provides a wealth of information in different forms such as articles, videos, and podcasts. The Retinal Education section provides disease-specific information, and you can find out about ongoing clinical trials and potential cures in our Research section.

2. Find a specialist

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There are some Retina Specialists who see and study patients on a regular basis. These experts are often better able to:

  • Manage any complications.
  • Discuss your prognosis.
  • Conduct appropriate tests and exams.
  • Suggest potential clinical trials for emerging therapies.

3. Consider genetic testing

Illustration of DNA Strand

Researchers have identified more than 351 genes associated with retinal degenerative diseases.

  • Gives you a definitive diagnosis for which disease is causing vision loss.
  • Confirms the inheritance pattern – that is, which family members may be at risk of having or inheriting the condition.
  • Helps you qualify for clinical trials of emerging therapies. Some studies may require a genetic diagnosis.

Visit the Genetic Testing section of the Foundation’s website for more information.

4. Join the My Retina Tracker Register

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My Retina Tracker® Registry (the Foundation's patient database) provides valuable information and data on IRDs to pre-screened researchers and companies for:

  • Developing therapies.
  • Recruiting for clinical trials.
  • Performing other disease-related studies.

5. Get connected with our communities

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The Foundation maintains a network of Chapters around the U.S. and holds seminars and meetings that provide information on research, low vision resources, and other helpful topics. Joining a Chapter is a great way to meet other people and families with blinding diseases in your area who can provide support and information on local resources.

6. Stay informed

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Stay up to date with the latest from the Foundation about research, clinical trials, events and more through our newsletter, podcasts and social media.

Sign up for email updates and news.

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Resource Download

Download Newly Diagnosed Patient Resources Infographic: 11x17

Download Newly Diagnosed Patient Resources Infographic: 11x17 (PDF, 1.49 MB)

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Download Newly Diagnosed Patient Resources Infographic: 8.5x11 (PDF, 1.47 MB)

Resource Download

Download Newly Diagnosed Patient Resources Infographic: 8.5x11 (Spanish Version)

Download Newly Diagnosed Patient Resources Infographic: 8.5x11 (Spanish Version) (PDF, 2.97 MB)
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The urgent mission of the Foundation Fighting Blindness is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases. The Foundation is a beacon for those affected by these blinding diseases. Join the fight and help us accelerate our mission.

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Foundation Fighting Blindness

Phone: (800) 683-5555

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Donations can be mailed directly to:
Foundation Fighting Blindness, P.O. Box 45740, Baltimore, MD 21297-5740

Retinal Education

  • Information for Newly Diagnosed
  • An Eye on Education Video Series
  • Achromatopsia
  • Bardet-Biedl Syndrome
  • Best Disease
  • Choroideremia
  • Leber Congenital Amaurosis
  • Macular Degeneration
  • PRPH2-Associated Disease
  • Retinitis Pigmentosa
  • Refsum Disease
  • Stargardt Disease
  • Usher Syndrome
  • X-Linked Retinoschisis (XLRS)
  • Other Retinal Conditions
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© 2023 Foundation Fighting Blindness, All Rights Reserved. The Foundation Fighting Blindness is a qualified 501(c)(3) non-profit organization and all donations are tax deductible. EIN 23-7135845.