Castleman Disease Collaborative Network

04/06/2026

You’re invited to Quest for a Cure 2026, our signature fundraising event ✨

Join us for an unforgettable evening as we come together to advance research and bring hope to those affected by Castleman disease.

📅 Thursday, May 14
📍 The Pumphouse, Bala Cynwyd

Enjoy a meaningful night of connection, purpose, and impact while helping drive the next breakthrough forward.

A limited number of tickets and sponsorship opportunities are available.

🔗 Learn more and reserve your spot: cdcn.org/quest

03/06/2026

Castleman disease can be difficult to recognize because its symptoms often overlap with other conditions.

Understanding the signs and how the disease is diagnosed can help patients and physicians identify it sooner.

If you or a loved one has been diagnosed with Castleman disease, or are still searching for answers, the CDCN community is here to help.

Learn more about Castleman disease at cdcn.org.

02/28/2026

Today is Rare Disease Day. 💜

Castleman disease may be rare but the strength of this community is not.

To every patient, loved one, physician, researcher, and supporter:
We see you. We honor you. We are in this fight together.

Now let’s make some noise for Castleman disease awareness. Share your photo, tag , and show the world the strength behind this rare disease.

02/25/2026

Rare Disease Day is almost here! Don't forget to do your and tag us to spread the word about Castleman disease. Here are a couple more of our favorite recent Warrior Flexes.

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. 💙💜