Castleman Disease Collaborative Network

11/17/2025

11/17/2025

Don’t miss our Community Gathering tomorrow, Tuesday, November 18 at 7 PM ET on Zoom!

We’ll share CDCN research updates, hear from Dr. Steven Rowe on how ferritin, CRP, and sCD25 can help distinguish HLH from Castleman disease, and get an update from Bridget Austin on the new ruxolitinib clinical trial. We’ll wrap up with a live Q&A with Dr. Fajgenbaum.

There’s still time to register! Whether you’re newly diagnosed, a longtime warrior,or a loved one, this session is for you!

If you have any questions, feel free to reach out to Madison at madison@cdcn.org.

Register here: https://connect.cdcn.org/c/events/community-gathering-287fcf

11/14/2025

Your blood could help unlock new breakthroughs for iMCD. By choosing to donate, you’re directly powering the CDCN’s research and bringing us one step closer to a cure.

Want to learn how you can get involved? Reach out to Bridget at the CDCN for more information. Together, we can drive progress and bring hope to everyone affected by Castleman disease.

11/13/2025

Madison represented the CDCN this year at the National Organization for Rare Disorders, Inc. (NORD) Breakthrough Summit, presenting a poster on one of our newest initiatives, the Castleman Disease Expert Panel (CDEP)!

The CDEP connects treating physicians with Castleman disease experts through live, case-based discussions on Zoom to help improve diagnosis and care for patients around the world. 🌍💙

If you’re a physician seeking guidance on a challenging Castleman disease case, reach out to madison@cdcn.org to learn how to join an upcoming session!

11/13/2025

11/11/2025

We’re excited to invite you to our next Community Gathering on Tuesday, November 18 at 7 PM ET on Zoom!

Join us for CDCN research updates, a presentation from Dr. Steven Rowe on how ferritin, CRP, and sCD25 can help distinguish HLH from Castleman disease, and an update from Bridget Austin on the new Ruxolitinib clinical trial. We’ll close with a live Q&A with Dr. Fajgenbaum, so you can ask questions and connect with the community.

Whether you’re newly diagnosed, a longtime warrior, or a loved one—this gathering is for you. Register by clicking the link below. We can’t wait to see you there!

https://connect.cdcn.org/c/events/community-gathering-287fcf

11/10/2025

🏔️ The highest Castleman flex EVER?! We think YES.

Huge shoutout to the CSTL’s own Mike Gonzalez, who just summited Uhuru Peak, Mt. Kilimanjaro — 19,341 ft above sea level — proudly repping the fight against Castleman disease along the way!

Mike, Thank you for taking our mission to new heights (literally!). We are so proud and inspired by you! 💙

10/29/2025

🗓️ Save the Date!

Our next Community Gathering is happening Tuesday, November 18 from 7–8pm ET via Zoom. Patients, loved ones and caregivers are all welcome. Join us to connect with others in the Castleman disease community, hear important updates and learn about the latest research.

Stay tuned for the agenda and registration link! 💙

10/17/2025

Castleman disease (CD) can look very different from one patient to the next — from a single swollen lymph node in unicentric CD to severe inflammation in TAFRO.

A new review by Drs. Luke Chen, Lu Zhang, and David Fajgenbaum breaks down the latest understanding of CD, including newly recognized subtypes like oligocentric CD, asymptomatic MCD and idiopathic plasmacytic lymphadenopathy (IPL), plus key updates in treatment.

If you’re looking for one comprehensive resource on recent advances in Castleman disease, this is it!

You can read the full article here:acrjournals.onlinelibrary.wiley.com/doi/10.1002/art.43269

10/08/2025

10/03/2025

As many in our community know, idiopathic multicentric Castleman disease (iMCD) is a diagnosis of exclusion — doctors must rule out other conditions first. One of the biggest diagnostic challenges doctors face is telling iMCD-TAFRO apart from hemophagocytic lymphohistiocytosis (HLH), since both are rare cytokine storm syndromes with overlapping symptoms and lab abnormalities.

To tackle this, we partnered with Dr. Luke Chen, an expert in both Castleman disease and HLH, and his team to study how to better distinguish them. Our research identified key biochemical differences, particularly in ferritin, CRP, and sCD25 levels. These findings indicate testing for these values can be used as a helpful diagnostic tool to differentiate between two similar, yet distinct, rare diseases.

🔍 Read the full study at cdcn.org/publications.

10/03/2025