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