We are excited to report that Jordan Janz, the first cystinosis patient to receive the autologous stem cell and gene therapy treatment as part of the FDA approved clinical trial, returned home to Canada. Jordan and his mom, Barbara Kulyk, lived in San Diego after Jordan was transplanted on October 7, 2019. Jordan is a true …
The First Stem Cell Transplanted Cystinosis Patient Returns Home! Read More »
Thoughts on Returning to School and Work Paul Grimm, MD Regarding return to school in the fall for patients with cystinosis or post kidney transplant or are on dialysis what is a person to do? This is a question being asked all over the country and the world. I am involved with a number of …
COVID-19 And Cystinosis Thoughts About Returning To School and Work By Paul Grimm, MD Read More »
Pins for a Purpose – Bowling Tournament When: Saturday, March 21. 2020 Where: Drkula’s Bowl ( 6710 Cahill Ave, Inver Grove Heights, MN 55016) Time: 11:30am (Check-in for Moonlight bowling and silent auction), 3:00pm (Dinner) Isaac Andrews is an animated 4-year-old boy whose smile and laughter can light up a room. Talking to him you …
SAVE THE DATE – Saturday, April 18, 2020 Fashion Island Hotel, Newport Beach, California The Natalie’s Wish event is the most inspirational night of the year! Join us as we honor the children and adults with cystinosis who so courageously battle this disease. We will celebrate CRF’s milestones including an update on the stem cell …
CRF is excited to announce a new Cure Cystinosis International Registry (CCIR) launching soon.
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