Our Patient Navigator works to support Castleman disease patients and loved ones - help is free and confidential. We hope to help patients and loved ones obtain the most up to date information on Castleman disease, and access to all available resources and support.

The CDCN Patient Navigator can assist patients in:

  • Answering questions about Castleman disease and diagnosis
  • Sharing information on treatment guidelines
  • Providing expert physician referrals 
  • Connecting patients with other Castleman disease patients and loved ones
  • Offering support and guidance 
  • Being available to talk to someone who has shared a similar experience

To connect with a Patient Navigator, please join the CDCN Community here and we will be in touch within a business day.

If you are already a member of our community and want to be connected with a Patient Navigator, please call Mileva Repasky at (610) 304-0696 or email 

Castleman disease patients - be sure to check out our ways to fight back after a diagnosis. Click here!

Any general questions or concerns, please email

Castleman disease is a journey for patients and their loved ones. It begins with a difficult diagnosis, followed by finding a specialist, choosing a treatment, recovering, and surviving. The CDCN and this site exist to provide resources and information to help you and/or your loved one effectively navigate each step of the journey. Together, we will beat this disease.


Patient Testimonies:

Lisa Verboomen from Seattle, WA shares her experience with Castleman disease at the first-ever "Beating Castleman's, Together" Summit, hosted by the CDCN:

Chris Kimura from Sandy Oak, CA talks about his experiences with multicentric Castleman disease at the "Beating Castleman's, Together" Summit: