First-ever Diagnostic Criteria and ICD-10 Code for Castleman disease!

Big strides were made recently for the diagnosis of Castleman disease patients! The first-ever diagnostic criteria for HHV-8-negative "idiopathic" Multicentric Castleman disease has been published in the top hema… READ MORE

Castleman Warriors and the ACCELERATE Registry hit National Headlines on CBS News!

Castleman Warriors Mileva Repasky, Shannon Baker and Dr David Fajgenbaum were featured in the November 28, 2016 edition of CNS News! Doctor with rare Castleman disease works to find a cure was written by CBS News jour… READ MORE

Second Annual Quest for a Cure Gala Raises Over $100,000 for research!

On November 4, 2016, about 300 people attended the Quest for a Cure gala, including about 60 patients and loved ones visiting Philadelphia for the 2016 Patient and Loved Ones Summit. Attendees enjoyed food, drinks, mu… READ MORE

The 2016 "Beating Castleman's, Together" Patient & Loved Ones Summit

The third annual Patient and Loved Ones Summit was our biggest summit yet!   On November 4-5, 2016, over 50 patients and loved ones traveled to Philadelphia from around the world, from all over the … READ MORE

Presenting the 2016 Castleman Warrior Awards!

At the 2016 Quest for a Cure Gala, the CDCN honored five people who embody the CDCN spirit with Castleman Warrior Awards. Each award winner was nominated by members of the CDCN community and were voted in by… READ MORE

Highlighting Priority Projects

ACCELERATE REGISTRY – Now registering patients! First ever natural history registry for Castleman disease patients around the world! This registry will track what treatments have been used in Castlema… READ MORE


UPDATE: The first ever Biobank of Castleman disease patient samples will be launched in November 2016!  Sample donation kits will be mailed to patients who are registered to donate. Patients who are attending th… READ MORE

Patient Driven Research

**UPDATE: Thank you to those of you who have participated in our patient driven research initiative!** **To participate in our patient drive research initiative, please fill out this Google form. We laun… READ MORE

The CDCN has been busy!

In all areas the CDCN has made a lot of progress. Multiple promising studies into Castleman’s are under way, fundraising and patient outreach events have been a huge success with more on the way and numerous pap… READ MORE

Faster, and better Progress through Patient centered Collaboration. The CDCN Model

The CDCN is taking a first-of-its-kind, business-inspired approach to advancing rare disease research. Not only is it patient powered and patient focused, but the CDCN also has a novel approach to fighting Castleman&… READ MORE