Castleman Disease Collaborative Network

Castleman Disease Collaborative Network Flares can behave clinically like mono, an autoimmune disease flare, or a severe sepsis-like episode.

The Castleman Disease Collaborative Network (CDCN) is a global nonprofit organization dedicated to accelerating research and treatment for this rare disease, and supporting patients on their journeys. Castleman’s Disease (CD) is a rare and poorly-understood lymphoproliferative disorder that occurs in people of all ages, causes lymph node enlargement, and flares can be deadly. There are two main types of the disease:
-Unicentric Castleman’s Disease (UCD), involves one lymph node area and can typically be cured by removing the diseased node, but the disease can be very serious from direct damage to nearby organs or post-surgical damage.
-Multicentric Castleman’s Disease (MCD), involves multiple lymph nodes and causes individuals to become severely ill. There is no cure for MCD, but many patients have benefitted from antibody therapies which block IL6 signaling or chemotherapy. MCD involves the release of inflammatory chemicals called "cytokines" (particularly IL-6) that activate the immune system and can cause a range of symptoms from fatigue to multiple organ system dysfunction, such as liver, kidney, and bone marrow failure. The cause of the disease and pathophysiology are not well understood, and more research is urgently needed.

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

Today is Rare Disease Day. 💜 Castleman disease may be rare but the strength of this community is not.To every patient, l...
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.

Rare Disease Day is almost here! Don't forget to do your and tag us to spread the word about Castleman disease. Here a...
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.

02/25/2026
02/20/2026
Join us for our upcoming Community Gathering on Tuesday, February 24 at 7:00 PM ET in recognition of Rare Disease Day!He...
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!

When Kaila became critically ill with iMCD, she had already tried five medications without success. Through collaboratio...
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. 💜

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

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

Thank you to for an unforgettable night at the 2026 Young Investigator Draft! A special congratulations to Katherine Fo...
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! 👏💙

Rare diseases may be defined by numbers, but they are lived by people.Castleman disease is a rare immune disorder that o...
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. 💙💜

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3535 Market Street
Philadelphia, PA
19104

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Tuesday 9am - 6pm
Wednesday 9am - 6pm
Thursday 9am - 6pm
Friday 9am - 6pm

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