Our 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.”

Recordati

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. In addition, they have a new patient liaison program which offers support to their sylvant patients. Patients currently on sylvant can also access additional support resources here.

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.

Carenity

Carenity is a social network for patients with chronic conditions and their caregivers. Carenity is an online community that connects patients with chronic conditions (including rare diseases) and their caregivers. Join Carenity to support each other, stay informed to improve your everyday life and contribute to medical progress! Carenity is available worldwide with dedicated platforms in France, USA, United-Kingdom, Spain, Italy and Germany.

MediFind

MediFind is the world’s most advanced platform for helping people living with health conditions, from the most common to the very rare, find better care faster. From identifying the top global doctors to staying up to speed on the latest medical advances, MediFind is here to help.

Paradigm Medical Communications

Paradigm Medical Communications is an exemplary, award-winning, medical education company that develops innovative medical education activities, expertly tailored to fulfill the needs of diverse, sophisticated clinical audiences and diligently monitored to facilitate continuous growth and improvement. As medicine is a combination of art and science, so is the approach of Paradigm to the development of CME programming. You can learn more about the upcoming live events centered around Castleman disease and the role of the oncology nurse here. You can learn more about the updates in the diagnosis and treatment of Castleman disease: Expert Perspectives certification activity here. You can learn more about optimizing treatments of Idiopathic multicentric Castleman disease: Pharmacy Perspectives here. Finally you can learn more about the Critical Role of Pathology in the Diagnosis of Castleman Disease here.