The Castleman Disease Collaborative Network (CDCN) was co-founded in 2012 by Dr. David Fajgenbaum and Dr. Frits van Rhee to accelerate research to find a cure for Castleman disease (CD) and improve survival for all patients with CD. Drs. Fajgenbaum and van Rhee quickly linked a team of other physicians, researchers, patients, and loved ones to the project which has made tremendous progress over the last five years. The team continues to take an innovative approach in order to overcome many of the hurdles that exist in the Castleman disease field (poorly understood, few researchers, limited collaboration, different terminologies, no research organization, no diagnostic criteria) and the broader biomedical research system which often proves to be inefficient, random and slow. Our progress has only been possible because groups of physicians, researchers, patients and loved ones have all joined together. Read more about how patients and their loved ones have fought back against Castleman disease here.
Our mission is to accelerate CD research, treatment, and patient care through global collaboration, strategic investments in research, and supportive resources for patients and their loved ones. Learn more about our mission »
Our story is one of patients, loved ones, physicians, and researchers joining together to change the survival and outcomes of patients with CD.
Our CDCN Leadership team is made up of a talented group of physicians, professional students, physician-scientists, and patient volunteers. Meet the CDCN team »
We've assembled the 32 global experts on Castleman disease onto our Scientific Advisory Board. Meet our Scientific Advisory Board »
Over the last five years, the CDCN has made tremendous strides, including these highlights:
• Connected the global community of 400+ physicians and researchers through the three largest-ever Castleman disease research meetings and an online discussion board,
• Assembled a Scientific Advisory Board of 32 experts from eight countries,
• Leveraged the research community to prioritize and execute an International Research Agenda,
• Developed a collaborative partnership with Janssen Pharmaceuticals, and
• Engaged the global patient community through a patient summit, online discussion board, physician referrals, and educational materials. Read more about our accomplishments »
The CDCN is the research arm of Castleman’s Awareness & Research Effort (CARE), a California-based 501(c)3 nonprofit organization that has raised awareness and funds for Castleman disease since 2007. Read more about CARE »
The CDCN maximizes every contributed dollar by maintaining very low operating costs, promoting collaboration rather than duplication, and strategically funding high-impact research initiatives. Read more here »
The CDCN works with partner organizations, including academic institutions, advocacy organizations, governmental institutions, and pharmaceutical companies, to leverage our individual strengths to accelerate CD research and treatments. Read more »
Read about recent news articles, events and research milestones regarding Castleman disease. See recent updates here »