Castleman Disease Collaborative Network

Castleman Disease Collaborative Network Flares can behave clinically like mono, an autoimmune disease flare, or a severe sepsis-like episode.

The Castleman Disease Collaborative Network (CDCN) is a global nonprofit organization dedicated to accelerating research and treatment for this rare disease, and supporting patients on their journeys. Castleman’s Disease (CD) is a rare and poorly-understood lymphoproliferative disorder that occurs in people of all ages, causes lymph node enlargement, and flares can be deadly. There are two main types of the disease:
-Unicentric Castleman’s Disease (UCD), involves one lymph node area and can typically be cured by removing the diseased node, but the disease can be very serious from direct damage to nearby organs or post-surgical damage.
-Multicentric Castleman’s Disease (MCD), involves multiple lymph nodes and causes individuals to become severely ill. There is no cure for MCD, but many patients have benefitted from antibody therapies which block IL6 signaling or chemotherapy. MCD involves the release of inflammatory chemicals called "cytokines" (particularly IL-6) that activate the immune system and can cause a range of symptoms from fatigue to multiple organ system dysfunction, such as liver, kidney, and bone marrow failure. The cause of the disease and pathophysiology are not well understood, and more research is urgently needed.

Thank you to everyone who joined us at our annual Accelerating Research & Treatment for Castleman Disease Working Dinner...
12/11/2025

Thank you to everyone who joined us at our annual Accelerating Research & Treatment for Castleman Disease Working Dinner at ASH!

We’re so grateful to this incredible community of clinicians, researchers, and partners who showed up to share updates, exchange ideas, and shape the future of Castleman disease research together. Your commitment fuels progress and nights like this remind us what’s possible when we collaborate.

A special thank you to our guest presenters Dr. Lu Zhang, Dr. Melanie Mumau, Dr. Ariela Noy, Dr. Frits van Rhee, and Dr. David Fajgenbaum for leading such thoughtful and inspiring discussions.

Here’s to continued breakthroughs ahead! 💙

12/03/2025
Today is Giving Tuesday and for families facing Castleman disease, every breakthrough starts with you.Behind every break...
12/02/2025

Today is Giving Tuesday and for families facing Castleman disease, every breakthrough starts with you.

Behind every breakthrough is a patient, a loved one, and a community refusing to give up, just like the faces you see here. When you give today, you’re powering research, connecting patients to expert care, and helping families feel less alone in the fight.

Right now, your generosity allows the CDCN to turn discoveries into treatments, questions into answers, and fear into hope for patients around the world. 💙

Stand with this community today and help create the next breakthrough:
cdcn.org/join-the-fight/donate/?projectCode=YE2025&segmentCode=YE1125SM1

11/21/2025
11/17/2025
Don’t miss our Community Gathering tomorrow, Tuesday, November 18 at 7 PM ET on Zoom!We’ll share CDCN research updates, ...
11/17/2025

Don’t miss our Community Gathering tomorrow, Tuesday, November 18 at 7 PM ET on Zoom!

We’ll share CDCN research updates, hear from Dr. Steven Rowe on how ferritin, CRP, and sCD25 can help distinguish HLH from Castleman disease, and get an update from Bridget Austin on the new ruxolitinib clinical trial. We’ll wrap up with a live Q&A with Dr. Fajgenbaum.

There’s still time to register! Whether you’re newly diagnosed, a longtime warrior,or a loved one, this session is for you!

If you have any questions, feel free to reach out to Madison at madison@cdcn.org.

Register here: https://connect.cdcn.org/c/events/community-gathering-287fcf

Your blood could help unlock new breakthroughs for iMCD. By choosing to donate, you’re directly powering the CDCN’s rese...
11/14/2025

Your blood could help unlock new breakthroughs for iMCD. By choosing to donate, you’re directly powering the CDCN’s research and bringing us one step closer to a cure.

Want to learn how you can get involved? Reach out to Bridget at the CDCN for more information. Together, we can drive progress and bring hope to everyone affected by Castleman disease.

Madison represented the CDCN this year at the National Organization for Rare Disorders, Inc. (NORD) Breakthrough Summit,...
11/13/2025

Madison represented the CDCN this year at the National Organization for Rare Disorders, Inc. (NORD) Breakthrough Summit, presenting a poster on one of our newest initiatives, the Castleman Disease Expert Panel (CDEP)!

The CDEP connects treating physicians with Castleman disease experts through live, case-based discussions on Zoom to help improve diagnosis and care for patients around the world. 🌍💙

If you’re a physician seeking guidance on a challenging Castleman disease case, reach out to madison@cdcn.org to learn how to join an upcoming session!

11/13/2025

Address

3535 Market Street
Philadelphia, PA
19104

Opening Hours

Monday 9am - 6pm
Tuesday 9am - 6pm
Wednesday 9am - 6pm
Thursday 9am - 6pm
Friday 9am - 6pm

Telephone

+16103040696

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