Newly Diagnosed

The CDCN is dedicated to supporting patients throughout their journey with Castleman disease.

We are here to help.

From CDCN Co-Founder, David Fajgenbaum

Dear Castleman disease patients and loved ones,

I wish that you did not need to join this community. I wish that there was not a need to have an international community of patients, loved ones, physicians and researchers through the Castleman Disease Collaborative Network. I wish that this disease wasn’t such a mystery to the medical community with so much to learn. But I don’t know what I would do if I didn’t have this community, because I also have Castleman disease, and the CDCN gives me hope for my future, hope that we can cure this disease, and a family to turn to in my most difficult times. Welcome to the Castleman disease family. We are here for you.

— David Fajgenbaum, Castleman Warri, Co-Founder & Executive Director, Castleman Disease Collaborative Network

New Diagnosis

A new diagnosis of Castleman disease can be a lot to take in and you likely have many questions about your diagnosis and what your Castleman disease journey may look like. We are here to help.

The links below will help you understand, manage, and fight back against Castleman disease. If you ever have any questions or if we can help you in any way, please do not hesitate to contact us.

Next Steps

Join the CDCN Community

  • Although Castleman disease is considered rare, we have an incredible community of patients, loved ones, physicians, and researchers fighting to cure Castleman disease. By joining our community, we can not only provide you with patient resources and information, but also 24/7 support to answer any questions that you may have as well as connect you with other patients and loved ones who know what you’re going through.

What is Castleman Disease?

  • We are here to provide you with easy to understand and up to date information on Castleman disease diagnosis, classification, symptoms, and treatment.

Find a Physician

  • The CDCN has compiled a global database of physicians who are experts in the field and who are experienced at treating Castleman disease.

Help Find Your Cure

  • We know firsthand that no one is more motivated than patients and their loved ones to help find a Cure for Castleman disease. Help the CDCN continue to accelerate the search for a cure by sharing your data, your samples, and your story.
    1. Donate your medical data to the ACCELERATE patient registry
      ACCELERATE is the first global patient registry for Castleman disease. It collects thousands of datapoints from anonymous medical records and patient-reported information to help physicians and researchers recognize trends in Castleman disease and evaluate the effectiveness of treatments.
    2. Donate tissue samples for research
      We are constantly gaining insights into Castleman disease and these breakthroughs would not be possible without the valuable donation of blood samples and lymph node tissue, particularly from patients currently experiencing Castleman disease symptoms. The CDCN stores these precious samples in a biobank so that research can continue at such a relentless pace.

Find Support

  • The diagnosis of Castleman disease can be scary and many people feel alone in this fight. All people affected by Castleman disease are faced with challenges and difficult decisions that can make dealing with a rare disease even more taxing. Connect with others via online support groups, the patient ambassador program, and by telling your story.

Contact Us

  • The Castleman Disease Collaborative Network is here to help you. Contact us via email, phone, or by filling out the form here.
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