Castleman Disease Collaborative Network

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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 ty

pes 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.

26/07/2025
We wish David never went through the pain from losing his mom or battling Castleman disease but we are so thankful for t...
26/07/2025

We wish David never went through the pain from losing his mom or battling Castleman disease but we are so thankful for the way he fought back! He’s transformed treatment of our disease and many more!

You’ve got to check out his amazing book- Chasing My Cure - if you haven’t! www.chasingmycure.com

This is so awesome! We are so thankful for David Fajgenbaum’s fight to take down this disease for himself and so many ot...
26/07/2025

This is so awesome! We are so thankful for David Fajgenbaum’s fight to take down this disease for himself and so many others! He’s transformed treatment of our disease and many more!

You’ve got to check out his amazing book - Chasing My Cure - if you haven’t yet! www.chasingmycure.com

Today is World Castleman Disease Day — a day to recognize the strength of our community and the hope that connects us ac...
23/07/2025

Today is World Castleman Disease Day — a day to recognize the strength of our community and the hope that connects us across continents.

At the CDCN, we fight for earlier diagnoses, more effective treatments, and a future where no one faces Castleman disease alone. But we can’t do it without you.

Help us turn hope into action by sharing, donating and standing with our community today. 💙

Text WorldCDDay25 to 41444 or visit cdcn.org/annual-events/world-castleman-disease-day/ to donate!

Tomorrow is World Castleman Disease Day, an important occasion to honor the experiences of those battling Castleman dise...
22/07/2025

Tomorrow is World Castleman Disease Day, an important occasion to honor the experiences of those battling Castleman disease. The confusion, fatigue, and frustration can feel overwhelming, but the CDCN exists to support patients and advance our understanding of CD.

Help us make a difference in the lives of the patients and loved ones in our community by donating today to fund life-saving research. Text WorldCDDay25 to 41444 or visit cdcn.org/annual-events/world-castleman-disease-day/

Of course, we couldn’t do a Summit without him! Dr. David Fajgenbaum is back and will be joining us as a featured speake...
21/07/2025

Of course, we couldn’t do a Summit without him! Dr. David Fajgenbaum is back and will be joining us as a featured speaker at the 2025 Patient & Loved One Summit!

David is the co-founder and President of the CDCN, a leading rare disease researcher and advocate, a best-selling author, and most importantly, a fellow Castleman disease patient. After being diagnosed with idiopathic multicentric Castleman disease (iMCD) during med school, he turned his life-threatening experience into a mission to help others and change the way rare disease research is done.

He’s been at the forefront of Castleman disease research ever since, leading studies, building the CDCN community and even identifying the treatment that put him into his longest remission yet.

At this year’s Summit, David will be leading the Castleman Disease Overview session and joining the expert Q&A panel, where you’ll get the chance to learn directly from him and ask questions.

There's still time to register to attend the virtual sessions by visiting cdcn.org/annual-events/patient-and-loved-one-summit.

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PA

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Monday 09:00 - 18:00
Tuesday 09:00 - 18:00
Wednesday 09:00 - 18:00
Thursday 09:00 - 18:00
Friday 09:00 - 18:00

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