Rare As One Partner
Castleman Disease Collaborative Network
Since its founding in 2012, the Castleman Disease Collaborative Network (CDCN) has made immense progress in accelerating the search for a cure, improving patient care, and harnessing the power of patients, loved ones, clinicians, and researchers to raise awareness about Castleman disease and build community. Through an innovative collaborative network approach, the CDCN has assembled a global network of experts while ensuring that the top researchers have the funding they need to make meaningful contributions to help find a cure for Castleman disease. The CDCN has flipped the traditional model of rare disease research on its head, and in doing so, it has been recognized as a model for patient-led rare disease research organizations.
By establishing a global collaborative network, the CDCN has connected over 800 physicians and researchers in 65 countries. In addition, the CDCN is led by a scientific advisory board of three expert physicians and researchers who set research priorities and evaluate research discoveries. This large-scale collaboration has led to the analysis of over 1000 patient samples in over 40 active or completed studies, which has in turn led to over 30 peer-reviewed publications so that the CDCN’s discoveries are readily disseminated to the scientific community.
The Chan Zuckerberg Initiative supports the CDCN as it works to develop an international research agenda that includes drug repurposing and to produce a roadmap for rare disease organizations to advance drug repurposing as a key aspect of their research agendas.