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Castleman Disease Collaborative Network

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Castleman Disease Collaborative Network

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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.

10/22/2026

When you live with a rare disease, finding “your people” can feel impossible. In Phoenix, we found a whole room full of them.

Last week we hosted our first-ever Satellite Summit in Phoenix, Arizona, and we’re still smiling. Patients, loved ones, physicians, and researchers came together from across the country to learn, connect, and remind each other that no one faces Castleman disease alone.

We heard the latest research updates, visited the Banner Sun Health Research Institute, shared stories, swapped laughs, and flexed our warrior muscles more times than we can count. 💪

To every patient, loved one, speaker, and volunteer who made this weekend so special: thank you. You are the reason we do this work.

Stronger together, always. 💙

10/15/2026

“It started with stomach pain and vomiting. I thought maybe it was something I ate. But then I got so tired—like can’t-get-out-of-bed tired.

One day I just couldn’t go to school. The next thing I knew, I was being rushed to the emergency room. The doctors didn’t know what was wrong. They ran scans, bloodwork, MRIs—but nothing made sense.

Eventually, they told my parents: ‘You need to take her downtown to Lurie Children’s Hospital.’ That’s when things got really scary. My organs were starting to shut down. I was holding onto so much fluid my stomach looked nine months pregnant. I had tubes coming out of my chest to drain my lungs.

I was barely recognizable—my arms so thin my bracelets slid right up past my elbows. It took two months to finally get a diagnosis: idiopathic multicentric Castleman disease. It’s this rare disorder where your immune system goes haywire and starts attacking your body.

There’s one FDA-approved drug for it, but it didn’t work on me. Neither did the next one. Or the one after that. At some point, chemo became the only option. I lost my hair. I lost my energy. I lost track of how many nights I spent in the ICU. And still—nothing was working.

My doctors started to run out of options. That’s when they reached out to Dr. Fajgenbaum, who studies Castleman. He told them about a brand-new lab finding—just weeks old. A cancer drug called Ruxolitinib might help. It had never been tried for my condition before.

But they gave it to me. I remember the date: July 30, 2020. 5 years to the date. That was the day everything changed. For the first time, I got better. And I stayed better. I’ve been in remission ever since.

Now I’m a college freshman, studying to become a nurse—so I can help other kids the way my nurses helped me. I know what it’s like to be the one in the hospital bed.

I want to be the one standing next to it, saying: ‘You’re going to get through this. I did.’” - Kaila Mabus

09/11/2026

Today is the last day to register for our Satellite Summit in Phoenix, AZ — the final summit of the year!

Join us for an unforgettable opportunity to connect with fellow patients, loved ones, physicians, and researchers as we come together to learn, share, and strengthen our community.

Don't miss your last chance to be part of it by registering before the day is over!

Register today: https://forms.gle/U3RNuwzJtniHrEvD8

08/18/2026

Congratulations to our 2026 Warrior Award winners presented at our annual Patient and Loved One Summit in Philadelphia! 🏆

Patient of the Year: Frances Roof
Frances embodies everything it means to be a warrior. Through pregnancies, treatments, and every uncertainty this disease brings, she's shown up, not just for herself, but for the entire Castleman community. She's contributed samples and data to research, served as a Warrior Ambassador, and has a gift for making other patients feel seen and supported the moment they meet her. Her strength is quiet, but it speaks volumes.

Loved One of the Year: Caitlin Fajgenbaum
For years, Caitlin has stood beside David, her husband and our founder, without wavering through every part of his Castleman disease journey. That steadiness carries into everything else she does for this community too, from her tireless work behind the Quest for a Cure Gala to the countless families she's quietly supported along the way. She has always put patients and loved ones first, and she is the definition of this award: someone who gives everything to support others.

Thank you to both of you for the strength, generosity, and heart you bring to this community every single day. We are so lucky to have you as part of our CDCN family. 💙

08/14/2026

We are thrilled to announce the speakers for our first ever Satellite Patient & Loved One Summit happening in Phoenix, AZ on October 11-12! 🎉

We'll be bringing together an incredible lineup of Castleman disease experts and advocates who truly get it, with some joining us right there in the room and others connecting virtually from across the country.

If you've been on the fence about attending in person, let this be your sign. 🙌 Registration is still open at www.cdcn.org/summit and we would love to have you with us.

08/13/2026

A huge thank you to our incredible sponsor, Recordati Rare Disease, for making the 2026 CDCN Patient & Loved One Summit in Philadelphia possible! 💙

Year after year, Recordati's unwavering commitment to the Castleman disease community helps us bring patients, loved ones, and physicians together in a way that truly changes lives. We couldn't do this without you.

08/10/2026

Some of the strongest, most wonderful people we know spent three days together in Philly for our annual Patient and Loved One Summit. 💙

For a little while, no one had to explain what it's like to live with, or love someone with a rare disease.

Thank you to everyone who made the trip to be there. Already looking forward to our next Summit in Phoenix! ✨

07/30/2026

Can't make it to the 2026 Patient and Loved One Summit but still have questions for our experts?

You can still submit your questions using the link below to be discussed during the panel session using the link below. Each session will be recorded and posted on our website to watch back after the Summit.

Submit your questions here: https://forms.gle/mzEH4DR2TjfqWr1P7

07/23/2026

Today is World Castleman Disease Day and we want to see EVERYONE flex! 💪 Whether you're a Warrior, a caregiver, a doctor, or a friend of the cause, strike your best Warrior Flex pose and post it with and tag !

Every flex helps show the world that Castleman Warriors are strong, resilient, and never alone.

07/21/2026

10 days to go! 🎉 We are counting down to the 2026 Patient and Loved One Summitand the energy is building. Get ready for powerful conversations, inspiring guest speakers, and a community that shows up for each other.

Can't make it in person? No problem — you can still register to attend virtually!

📅 July 30 – August 1, 2026
🔗 Register here: cdcn.org/annual-events/patient-and-loved-one-summit/

We can't wait to see you there. 💙

Address

3535 Market Street
Philadelphia, PA
19104

Opening Hours

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

Telephone

+16103040696

Website

http://www.cdcn.org/

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