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Natalie Stack 5th Patient Stem Cell and Gene Therapy Trial – March 29, 2022
August 3, 2022
Tyler Joynt – 4th Patient in the Stem Cell and Gene Therapy Trial on November 15, 2021
August 3, 2022
Stem Cell Trial Phase I/II Updates by Stéphanie Cherqui, PhD
August 3, 2022

Research Progress Report by Pascal Laforêt, MD, PhD and Hélène Prigent, MD, PhD, Raymond Poincaré University Hospital, Garches, France

February 21, 2023

“Improving Characterization of Neuromuscular Involvement in Adults with Cystinosis”. Beside the consequences of renal failure, long-term prognosis of cystinosis seems to be related to neuromuscular

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Research Progress Report by Reza Seyedsadjadi, MD, and Florian Eichler, MD, Massachusetts General Hospital, Boston, Massachusetts

February 20, 2023

“Optimizing Dysphagia Assessments Using MBSImP in Adults with Nephropathic Cystinosis”. Swallowing difficulty is a major concern in patients with nephropathic cystinosis. The results of this

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Join us on Rare Disease Day February 28, 2023 and Celebrate our Research Progress

January 24, 2023

Although we are rare, we dare to do the remarkable! There are approximately 7,000 rare diseases affecting over 30 million people in the United States.

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Final Report: Studies Using Zebrafish Models by Dr. Chen and Dr. Devuyst

January 24, 2023

Olivier Devuyst, MD, PhD, and Zhiyong Chen, PhD, University of Zurich, Switzerland That fish in your aquarium is becoming a fighter in the battle against

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Research for Ocular Cystinosis by Dr. Morgan DiLeo and Dr. Xin Fan

January 24, 2023

Morgan DiLeo, PhD, and Xin Fan, PhD, University of Pittsburgh, Pennsylvania CRF continues to partner with Dr. DiLeo, whose exciting work is paving the way

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Research by Dr. Jennifer Hollywood-A Drug Better than Cysteamine?

January 24, 2023

Jennifer Hollywood, PhD, University of Auckland, New Zealand Could this new drug be better than cysteamine?  Since 2020, CRF has awarded $430,422 to Dr. Jennifer

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Who We Are

  • What is Cystinosis?
  • About CRF
  • Leadership
  • Financials
  • Videos
  • Cystinosis Magazine
  • CRF News
  • Contact

For Families

  • Family Stories
  • Canadian Families
  • Current Clinical Trials
  • Cure Cystinosis International Registry (CCIR)
  • Tools for Fundraising
  • Resources

For Researchers

  • Research Overview
  • Apply for Research Grant
  • Grants Awarded
  • Published Studies
  • International Cystinosis Research Symposium

Events

  • Natalie's Wish
  • Day of Hope

Together We Shine Bright

Donate
  • (949) 223-7610
  • info@cystinosisresearch.org
  • (949) 223-7610
  • info@cystinosisresearch.org