Castleman Disease Collaborative Network

02/20/2026

02/17/2026

Join us for our upcoming Community Gathering on Tuesday, February 24 at 7:00 PM ET in recognition of Rare Disease Day!

Hear important CDCN updates and learn about the latest Castleman disease research, featuring Dorottya Laczko presenting her work on a patient-derived CABIN1 mutation and what it means for those living with iMCD. A live Q&A will follow, giving you the chance to ask questions and connect directly with the CDCN team.

✨ Please note: Community Gatherings are now hosted on our new platform, CDCN Connect. Be sure to create an account (if you haven’t already) and register in advance.

New here? Create an account first, then register. https://connect.cdcn.org/join?invitation_token=6f6175e76422dcd4075dc1546ece3c036119388c-c9a0911a-e9a8-48fc-8e2d-c7a34f15bcd1

We can’t wait to see you there!

02/12/2026

When Kaila became critically ill with iMCD, she had already tried five medications without success. Through collaboration with her physicians and family, the CDCN suggested the use of Ruxolitinib, an unprecedented treatment approach for iMCD.

Today, she’s celebrating 5 years in remission and she’s now in medical school, turning her experience as a patient into a future of caring for others.

Kaila’s story didn’t just change her life. It helped launch a clinical trial that may expand treatment options for other iMCD patients.

That’s the power of rare disease research and that’s why we keep going.

If you or a loved one is living with iMCD and are interested in learning more about the Ruxolitinib clinical trial, we encourage you to reach out to Bridget for more information.

Because rare doesn’t mean without options. 💜

02/10/2026

As we count down to Rare Disease Day, we’re coming together to raise awareness and celebrate the resilience of Castleman warriors everywhere. 💙

Share your on your page or with the CDCN for a chance to be featured by on our page and help shine a light on rare diseases.

Together, we’re stronger. 💪

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.