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Nonprofit Overview

Causes: Health, Specifically Named Diseases Research

Mission: CRF’s mission is to support bench, clinical and translational cystinosis research to find better treatments and a cure for cystinosis. It is our hope that quality of life for those with cystinosis will improve. Through our aggressively funded research agenda, the Cystinosis Research Foundation issues grants for bench and clinical research studies bi-annually in order to accelerate research progress and ensure that cystinosis research is on-going and focused on novel treatments and a cure.

Results: To date, the CRF has funded and committed more than $33 million to cystinosis research and has awarded 151 research studies and fellowships in 12 countries. Today, with the support of our partners, friends and community we have significantly changed the course of cystinosis research. Our funding efforts have allowed talented doctors and researchers in the area of cystinosis to initiate novel research studies and to advance their research efforts. We have reached important CRF milestones in research developments and significant advancements in the treatment of cystinosis. The CRF research funded at the University of California, San Diego (UCSD) has resulted in the development of a slow-release form of cysteamine. On April 30, 2013 the FDA approved the new drug Procysbi™.

Target demographics: fund research for better treatments and a cure for cystinosis.

Geographic areas served: the US and internationally

Community Stories

3 Stories from Volunteers, Donors & Supporters

Dave M.3


Rating: 5

Cystinosis Research Foundation has championed the drive to a cure for cystinosis since their inception over 15 years ago. Their unwavering dedication, commitment and collaboration has brought together the research community, philanthropic partners and worldwide cystinosis community as one united force with one goal in sight. To find a cure.

It is truly inspiring and fulfilling to be associated with the Cystinosis Research Foundation!


Rating: 5

The work that the Cystinosis Research Foundation does is monumental to the cystinosis community. 100% of EVERY dollar raised goes to cystinosis research. CRF is not only the leading funder of research for cystinosis in the world but they are also a conduit to bring cystinosis families, researchers and scientists together. They have put their hearts and souls into finding better treatments and a cure for cystinosis There is nothing more amazing than that!

Rebecca H.6


Rating: 5

Cystinosis Research Foundation is an amazing group of leaders and volunteers who have made great strides helping those individuals and families impacted by cystinosis. They conduct a family conference every year to educate families on research breakthroughs and connect with one another for emotional support.

I am most impressed by their ability to raise funds to find a cure. They are so genuine and caring, yet completely focused on the goal. They are a great group to get involved with and support.