What we Know about Castleman Disease

  • Castleman disease causes the immune system to become out of control
  • The immune cells in the out of control immune system rapidly proliferate in the lymph node and release inflammatory signals called cytokines
  • Cytokines cause flu-like symptoms and damage organs in the body, such as the liver, kidneys, and bone marrow, which may even lead to organ failure.

What we Need to Know about Castleman Disease

  • What causes the immune system cells to be out of control and release the inflammatory signals that damage the body?
  • What type of immune cells are involved in Castleman disease?
  • What are all of the cytokines (inflammatory signals) released?
  • What are treatments that can help?

What the CDCN is Doing to Find Answers

The CDCN has been working over the last four years to find a cure for Castleman disease and we are making progress. There are many studies to find answers to the questions about Castleman disease.

Why it is Important to Help

Castleman disease affects both children and adults, making them very sick with flu-like symptoms and enlarged lymph nodes.  Castleman disease can also lead to organ failure and even death. Research will also allow us to find new ways to identify Castleman disease in patients leading to faster diagnosis which will result in faster time to treatment. We also need to know what causes the disease in order to find a cure.

 In order to find new ways to diagnose the disease and find out what causes Castleman disease, researchers need to be able to study patients’ blood, saliva, and lymph nodes. Because there are so few patients with Castleman disease, it is difficult for researchers studying the disease to obtain the blood and tissue samples they need so they can conduct research.  To find a cure we need patients to donate blood, saliva, and tissue samples for our research studies.

It is Easy to Help

You can help us find a cure for Castleman disease and save lives by donating blood, saliva, and/or lymph node tissue samples for our research studies. We have made sample donation quick and easy. Let us know if you are interested in participating in a study.

  • Participation in studies is free and easy.  We will pay for all shipping and blood collection costs.
  • We will mail the package to you with a collection kit and easy to follow directions.
  • You go to a clinical laboratory near you or see if your doctor will order the lab draw at your next visit.
  • Your information will be protected when you participate in studies or join the CDCN community. All of your information will be kept private and confidential. 

What can you do to Help?

You can help make a difference for patients with Castleman disease by helping us find a cure for this deadly disease. Here’s what you can do now.

  • Complete a brief survey. If you or your loved one has Castleman disease, click here. This will help us know if you qualify to participate in any of our upcoming research studies.
  • Join the CDCN community! Let us know that you or your loved one has Castleman disease. It’s quick and it is easy.  Just click here and fill out a short form. 
  • Contact us. We are happy to answer any questions you have about participating in research studies to help fight Castleman disease.

Thank you for your help in finding a cure!