When the Cystinosis Research Foundation was established, one of our goals was to improve the quality of life for children with cystinosis. Finding more effective treatments for cystinosis was the key to that goal. We have aggressively pursued new and cutting-edge research by pursuing the best and the brightest scientists. The CRF approach to research is interdisciplinary and multi-faceted. We prioritize collaborations and cystinosis research studies that result in human clinical trials. We are increasingly focused on the clinical and translational research crucial to making the necessary strides toward a cure for cystinosis.
Cystinosis Research Overview
The Cystinosis Research Foundation’s mission is to support bench, clinical and translational cystinosis research to find better treatments in order to find a cure for cystinosis. Funding quality research studies remains a priority and is an ongoing process.
Learn more about cystinosis research efforts
Since 2003, the Cystinosis Research Foundation has funded and committed more than $25.8 million in cystinosis research, making the CRF the largest provider of grants for cystinosis research in the world. Our researchers are working in 12 countries around the world to find better treatments and a cure for cystinosis.
Clinical Studies Volunteers
Over the past few years there have been new cystinosis research developments and significant advancements in the treatment of cystinosis. Dr. Ranjan Dohil’s research study funded by CRF at the University of California, San Diego (UCSD) has resulted in the development of a slow-release form of cysteamine.
Participate as a patient volunteer
International Research Symposium
The Fourth CRF International Cystinosis Research Symposium was held March 6 and March 7, 2014 at the prestigious Arnold and Mabel Beckman Center of the National Academies of Engineering and Science on the UCI campus. Hosted by the Cystinosis Research Foundation with sponsorships from Raptor Pharmaceuticals and Sigma-Tau, the symposium brought together more than 60 researchers and scientists from around the globe – each with a special expertise in some aspect of the care and treatment of cystinosis.
The Cystinosis Research Foundation held its Third CRF International Cystinosis Research Symposium on Thursday, March 29 and Friday, March 30, 2012 at the Beckman Center of the National Academies of Engineering and Science, Irvine, California. We are grateful to our generous sponsors, Raptor Pharmaceuticals Corp. and Sigma-Tau Pharmaceuticals, Inc., and also wish to acknowledge the dedication and commitment of the symposium co-chairs to bring together the most prominent cystinosis researchers to exchange their ideas about promising new study directions. Thank you to Corinne Antignac, MD, PhD, Stephanie Cherqui, PhD, Julie Ingelfinger, MD, Elena Levtchenko, MD, and honorary chairman, Jerry Schneider, MD, for helping to make the symposium a tremendous success.
The second CRF International Cystinosis Research Symposium was held Thursday, April 8, and Friday, April 9, 2010 at the prestigious Arnold and Mabel Beckman Center of the National Academies of Engineering and Science on the UCI campus. More than 60 researchers from the United States and Europe who have been working to achieve better treatments and a cure for cystinosis attended, and 39 presented their current research.