My RP Pathway
Answer a few questions and get a personalized guide to RP Hope’s research, genetic testing resources, trials, stories, events, and updates.
PersonalizeGenetics · Research · Community
Understand RP research. Find your path forward.
RP Hope helps patients, families, caregivers, researchers, and supporters navigate retinitis pigmentosa research, genetic insights, clinical trials, events, and community resources.
Where to begin
Choose your path
RP Hope supports families at every stage — whether you have genetic answers or are just beginning to find them.
Genetic Insights
Already know what you need? Look up any RP-linked gene for a clear summary, where research stands, and related trials.
BrowseGenetic InsightsBrowse all genes
Explore genes linked to RP
Clear, jargon-free summaries of what each gene means, what research exists, and where trials stand today.
USH2A
Active TrialsThe most common cause of Usher syndrome type 2, affecting both hearing and vision with progressive retinal degeneration typically starting in adolescence.
View insightPDE6B
Emerging ResearchCauses autosomal recessive retinitis pigmentosa with rod photoreceptor loss beginning in early childhood, often leading to significant vision loss by mid-life.
View insightRPGR
Gene Therapy TrialsAn X-linked gene predominantly affecting males with severe, early-onset rod-cone dystrophy; gene therapy trials are among the most advanced in the RP field.
View insightWhat we do
Research made understandable
We do the work of translating complex science so you can focus on what matters.
Summaries
Clear, Jargon-Free Summaries
Complex research translated into language families can actually use — no PhD required. We break down what each study means for patients today.
Trials
Clinical Trial Updates
Find trials recruiting now, filtered by gene, location, and age. We track eligibility windows so families don't miss opportunities.
Community
Patient and Family Stories
Real accounts from people navigating RP — genetic testing, diagnosis, trials, and daily life. You are not alone in this journey.
Get involvedRegister free
Events & community
Upcoming Event
July 19, 2025 · 2:00 PM ET · Online
Understanding Your RP Genetic Report
A live Q&A with a genetic counselor and an RP researcher — bring your report, bring your questions.
Community
RP Hope Community Forum
Connect with others who share your gene, swap advice on navigating medical appointments, and find mentors who are years ahead on this path.
Join the communityHelp families access clearer RP research and community support.
RP Hope is a volunteer-led nonprofit. Every dollar funds clear, jargon-free research summaries, genetic counseling resources, and family support programs.