Castleman Disease Collaborative Network

02/06/2026

When Ian was just 22, his health changed suddenly, marking the start of a rare disease journey no family expects.

What began as swelling and fatigue soon became something far more serious. While Ian fought to get answers, his mom Tammy was searching from the other side of Canada, traveling thousands of miles and spending countless late nights researching, reading patient stories, and refusing to stop asking questions.

With the help of dedicated clinicians, Ian was diagnosed with iMCD-TAFRO, a rare and life-threatening form of Castleman disease.

Today, Ian is stable, and Tammy is turning their experience into advocacy to help future patients get answers sooner.

For Rare Disease Day, we honor families like Ian and Tammy’s, whose strength, persistence, and love remind us why awareness and research matter.

02/05/2026

Thank you to for an unforgettable night at the 2026 Young Investigator Draft!

A special congratulations to Katherine Forsyth, our 2026 grant recipient! We’re so excited to support her groundbreaking research as she explores new, targeted treatment strategies, especially for patients who don’t respond to existing therapies. We know she’s going to do amazing things! 👏💙

02/04/2026

Rare diseases may be defined by numbers, but they are lived by people.

Castleman disease is a rare immune disorder that often goes unrecognized, leading to delayed diagnoses, misdiagnoses, and years of unanswered questions. For patients and families, that delay can mean worsening symptoms, emotional strain, and feeling unseen in the healthcare system.

As we count down to Rare Disease Day, we’re lifting up the voices and lived experiences of the Castleman disease community because awareness is often the first step toward earlier diagnosis, better care, and hope.

Rare, but not alone. 💙💜

01/23/2026

Join us for our next community gathering for patients and loved ones on Tuesday, February 24, hosted via Zoom, as we come together to celebrate Rare Disease Day and the entire Castleman disease community! 💜

We’re honored to welcome Dorottya Lackzo, one of the CSTL's own, as she walks us through her latest research and how studying a patient-derived genetic mutation is helping shed light on idiopathic multicentric Castleman disease and potential future directions for the field.

We’ll close the session with a live Q&A featuring David Fajgenbaum and other members of the CDCN team.

🗓 Tuesday, February 24
📍 Via Zoom
👉 Register here: https://connect.cdcn.org/c/events/community-gathering-287fcf-97091a-2a735538-9847-4b7e-be82-73774dd4ed63

We hope you’ll tune in for this meaningful conversation and time together as a community.

01/23/2026

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! 💙