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Rare Disease Conference 2024 - Rare Disease Summit
March 19-21, 2024
Pre-Conference Workshops on March 18, 2024Philadelphia Marriott Downtown | Philadelphia, PA

Kristin Smedley
CEO 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

  • Co-Chair Opening Remarks

  • Co-Chair Review of Day One

  • Co-Chair Review of Day Two