Castleman Disease Collaborative Network

04/20/2026

We’re gearing up for the Million Dollar Bike Ride and we’d love for you to be part of it! 🚴‍♂️

Join Team Castleman and ride or walk with us, whether in person or virtually. There’s something for everyone: a 1-mile walk or ride distances of 10, 32, 50, or 70 miles to choose from.

Not up for riding or walking? You can still make a huge impact by donating to support our team and the fight against Castleman disease: https://charity.pledgeit.org/MillionDollarBikeRide/teams/TeamCastleman

Every step, every mile, and every dollar brings us closer to better treatments and a cure. Join us or support us today! 💙

04/15/2026

04/08/2026

Registration and travel grants are now open for the 2026 Patient & Loved One Summits

Join us for two opportunities to connect, learn, and build community with others impacted by Castleman disease.

These Summits bring together patients, loved ones, and experts for meaningful conversations, education, and support.

Travel grants are available to help make attendance possible

👉 Register and apply today: www.cdcn.org/summit

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.