How long does it take to turn a discovery into a potential treatment? For us, about 30 years. ⏳
In 1990, PRRF-funded researchers began studying the Norrin protein. In 2021, that work entered the FDA process as Noregen™, a potential therapy for FEVR now preparing for clinical trials.
Rare disease research takes patience, and people who believe in it from the very start. Read our story: prrf.org/about/#financials
An update on Emilee (it’s a good one!) 🙌
Six surgeries this year. The last one was in August, and last week she hit ten weeks with no detachment. Her doctor said everything looked “perfect” which is a word she’d been waiting all year to hear.
She’s cleared to travel, work, exercise. Cleared, as she puts it, to go back to life.
She’s also finding that harder than expected, and she wrote honestly about why. New post is up: prrf.org/retinal-detachment-recovery-six-surgeries-part-2/
#PatientExperience #VisionLoss #MedicalCoding #Resilience #prrf #raredisease #pediatricretinaldisease #lowvision #blind #awareness #community #rarediseaseresearch
🎃 Happy Halloween! Looking for a fun craft? Print this photo and have your child color in the pumpkin's eye patch!
© 2026 Pediatric Retinal Research Foundation.
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