patient resources
Trusted external resources for patients with retinal degenerative disease and the people who care for them. The Fortenbach Lab does not endorse any single organization; this page is a starting point.
This page includes external resources we frequently share with patients and families. It is not a substitute for evaluation by a retina specialist, and the lab does not provide direct clinical care or genetic counseling through this site. If you are a UW Medicine patient, please contact your care team or the UW Department of Ophthalmology to schedule an appointment.
Information about retinal disease
- National Eye Institute, Inherited retinal diseases overview, plain-language explanations of conditions and trial concepts.
- MedlinePlus Genetics, searchable plain-language summaries of specific gene-disease pairs (example: USH2A).
Research and patient organizations
- Research to Prevent Blindness (RPB), rpbusa.org. One of the leading non-profit funders of vision research in the United States. RPB supports research at academic departments of ophthalmology, including the Fortenbach Lab, and provides patients and the public with vetted information about vision research and emerging therapies.
- My Retina Tracker®, my.fightingblindness.org. A patient registry that helps individuals with inherited retinal disease stay informed about clinical trials and research relevant to their specific diagnosis.
- Prevent Blindness, preventblindness.org. Practical resources on living with low vision and on systemic eye-health conditions.
Clinical trials
- ClinicalTrials.gov, clinicaltrials.gov. The official US registry. Search by condition (e.g. retinitis pigmentosa, Stargardt disease, macular degeneration) and recruitment status.
- My Retina Tracker (above) sends notifications about trials matching your registered diagnosis.
Local UW resources
If you spot a broken link or have a resource that should be on this list, please email me, see the contact page.