Partners

The CDCN has built relationships with corporate partners and other rare disease organizations with aligned values.

Chan Zuckerberg Initiative

The CDCN was awarded a grant from the Chan Zuckerberg Initiative, whose science program supports the science and technology that will make it possible to cure, prevent, or manage all diseases by the end of the century. CZI’s Rare as One Project supports patients to accelerate progress against rare diseases. We’re partnering with CZI to create a framework and tools to allow other rare disease organizations to follow our blueprint to find cures.

“A small but growing number of rare disease patient organizations are making progress in their disease areas with remarkable success,” said Tania Simoncelli, CZI Science Policy Director and Rare As One Project lead. “These efforts have resulted in the development of new disease models, diagnostic criteria, drug targets, clinical trials, and — in some cases — new approved therapies in remarkably short timeframes. Our goal is to scale these successes more broadly across the rare disease community.”

EUSA Pharma

The maker of siltuximab, the only FDA-approved therapy for iMCD, this global biopharmaceutical company focused on oncology and rare disease provides funding for critical CD community meetings. These include education at the Patient & Loved One Summit and physician/researcher collaboration at our annual working meeting.

 

Medidata Solutions

A technology company that has contributed bioinformatic expertise and access to proprietary machine learning software to allow the CDCN to effectively analyze research data. The team collaborated on analyses of serum proteomics data from over 200 individuals to advance understanding of CD.

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