Castleman Disease Collaborative Network

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

09/30/2025

So proud that we’ve been selected to the 2025 TIME100 Next list, recognizing the top 100 “emerging leaders from around the world who are shaping the future.”

This recognition is a testament to our amazing teams at Every Cure, University of Pennsylvania, Castleman Disease Collaborative Network, our incredible partners, and all of you who have helped to advance our mission and demonstrate the life-saving impact of our work!

While we are thrilled for the incredible awareness and humbled to be included alongside these leaders, our focus remains unwavering: to save and improve lives by repurposing drugs no matter how rare or common the disease or how old or overlooked the drug may be.

Thank you to everyone helping us advance this mission. I hope you’ll click the link below to read the full article written by Priscilla Chan from the Chan Zuckerberg Initiative

https://time.com/collections/time100-next-2025/7318850/david-fajgenbaum-2/

09/26/2025

On Tuesday night we wrapped up an incredible summer with Dr. Lu Zhang at the Phillies game! Over the past two months, Dr. Zhang joined us all the way from China to share his expertise and push forward Castleman disease research.

We’re deeply grateful for the time, energy, and insights Dr. Zhang contributed to the CDCN and CSTL, and we look forward to continuing our collaboration across borders.

Thank you, Dr. Zhang! You’ll always be part of the CDCN/CSTL family! 💙⚾

09/22/2025

09/18/2025

Many autoimmune and inflammatory conditions can appear similar to idiopathic multicentric Castleman disease (iMCD). Because of this overlap, reaching an accurate diagnosis can take time and often requires ruling out other conditions first.

If you or a loved one are experiencing ongoing autoimmune-like symptoms such as unexplained fevers, fatigue, night sweats, enlarged lymph nodes or unintentional weight loss, it’s important to talk with your doctor and ask for a thorough evaluation.

To confirm a Castleman disease diagnosis, a lymph node biopsy is required. This helps doctors distinguish CD from other diseases and ensures you get the right treatment plan as soon as possible.

Remember, you’re not alone! The CDCN is always here to make sure you get the care and support you need. 💙

09/17/2025

09/15/2025