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Rare Disease Conference 2024 - Rare Disease Innovation & Partnership Summit
Stay tuned for 2024 dates!
Delivered as a Hybrid Event

Kristin Smedley
President at Curing Retinal Blindness Foundation


Kristin Smedley is Founder and CEO of the patient organization for the rare eye disease her sons have, CRB1 LCA/RP. She has led the Curing Retinal Blindness Foundation to raise over $1.5 million and achieved a National Rare Eye Disease Awareness Day. That legislation, H.R. #625, was the first in US history to be submitted in Braille and it advocates for better resources for blind and visually impaired Americans.

Kristin’s testimony at the FDA to help achieve the first ever FDA approved gene therapy, Luxturna, sparked an international study on the cost of blindness to communities. Kristin is a TEDX speaker, best-selling author and an Executive Producer on the short documentary “The Greatest Equalizer,” (April 2023) a partnership with Salesforce that provides solutions for the unemployment crisis in the disability community.

Agenda Sessions

  • Breaking Down the Four Identified Rare Disease Landscapes