Rare Champions of Hope Celebration

The Cystinosis Research Foundation was recognized by Global Genes as a Rare Champion of Hope Awardee for Research and Treatment. Together, we celebrate with all of the champions of hope for rare disease! We are deeply grateful to our community, our researchers and all of our donors for their steadfast commitment to finding better treatments […]

Cystinosis Research Foundation Awards $1,761,223 In New Research Grants

We are excited to announce that the CRF Scientific Review Board reviewed the cystinosis grant requests and recommended seven applications for funding, which total $1,761,223. Included was an award of $765,192 for our brilliant CRF researcher, Stéphanie Cherqui, PhD of UCSD, for the stem cell and gene therapy clinical trial, covering costs above and beyond the […]

Cystinosis Research Foundation Awards $2.4 Million in Research Grants

FOR IMMEDIATE RELEASE Spring Awards Fund 10 Scientific Studies in Five Countries, Bringing the Foundation’s Total Research Funding to $29.3 Million Since 2003 IRVINE, Calif. – September 24, 2018 – The Cystinosis Research Foundation, the largest provider of grants for cystinosis research in the world, announced today that it has awarded $2.4 million to date […]

The High Cost of Hope: When the Parallel Interests of Pharma and Families Collide

Kaiser Health News By Emily Kopp and Jay Hancock Photo Illustration by The Daily Beast Desperate for help finding a lifesaving drug for a genetic disease, families banded together to fund early research but found themselves at odds with the drug companies. A desperate but determined group of parents raised millions through golf tournaments and […]