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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 …

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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 …

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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 …

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