Castleman Disease Collaborative Network

01/14/2026

Quest for a Cure is back in 2026 and we can’t wait to celebrate with you! Join us on May 14, 2026, at The Pumphouse in Bala Cynwyd, PA, for an unforgettable evening bringing our community together to fuel breakthroughs, advance lifesaving research, and support patients and families affected by Castleman disease.

Mark your calendars—more details coming soon. We hope to see you there!

01/08/2026

Enrollment for our clinical trial testing Ruxolitnib on idiopathic Multicentric Castleman Disease (iMCD) is now open!

If you have iMCD and have not responded to treatment with Actemra or Sylvant, we would love to get in contact with you about a research study. Dr. David Fajgenbaum in the Department of Translational Medicine and Human Genetics is trialing the efficacy of the drug Ruxolitnib, also known as Jakafi, on treating idiopathic multicentric Castleman disease (iMCD).

To be a part of this trial, you will be asked to:
- Take Ruxolitnib every day for up to 1 year.
- Visit the University of Pennsylvania campus in Philadelphia, PA, twice for study visits and give blood samples.
- Provide health information from your medical records.

You may be eligible for reimbursement for travel to the Penn campus.

If you are interested in hearing more about the study, you can visit the website for this trial here: Ruxolitinib Clinical Trial - CDCN.

Or feel free to directly contact our team at cdtrial@pennmedicine.upenn.edu or 267-586-9977.

01/07/2026

In partnership with , we’re proud to announce that Dr. Katherine Forsyth of the CSTL has been awarded a $20,000 Young Investigator grant to advance research for idiopathic multicentric Castleman disease.

Katherine’s research investigates abnormal immune signaling in lymph node germinal centers, with a focus on dysregulated JAK/STAT pathway activation. By identifying disease-specific signaling patterns that may distinguish iMCD from other inflammatory conditions, her work aims to improve diagnostic accuracy and inform the development of new, targeted treatment strategies, especially for patients who do not respond to current therapies.

We hope you’ll join us Saturday, January 31, in Philadelphia as and celebrate Katherine alongside the other outstanding early-career researchers at Uplifting Athletes’ Young Investigator Draft. More information and tickets are available on our website!
https://cdcn.org/news/katherine-forsyth-presented-with-a-20000-research-grant-from-uplifting-athletes-and-castleman-disease-collaborative-network-cdcn/

01/06/2026

Looking for a way to cook with purpose?

Cooking With My Castlefam is a one-of-a-kind cookbook created by our Castleman Warriors and their families from around the world. Each recipe tells a story of strength, comfort, and connection.

Every purchase directly supports Castleman disease research and patient programs through the CDCN.

You can grab a physical copy or download it on Kindle, cook something delicious, and be part of the fight to cure this rare disease. 💙🍳

Physical Order Form: https://fundraise.givesmart.com/form/perlUA?vid=1mkiyb
Kindle: https://www.amazon.com/dp/B0G3J1NRSQ

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

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