The CDCN has been working tirelessly over the past four years and has made incredible progress. We have connected hundreds of Castleman disease physicians and researchers from around the world, provided support to thousands of patients and loved ones, established the current state of understanding on Castleman disease, and worked to execute studies that were determined by the experts in the research community to be of the highest priority.
Now the CDCN needs your help to continue this progress. We still don’t know what causes this disease, what immune cells are involved, or the most effective treatments. What we do know is that the answers to these questions are within each of us!
How you can help...
- ...RIGHT NOW: If you are a patient or the parent of a child with Castleman disease, complete the following brief survey so that we can see if you or your child may be a good candidate for one of our research studies: If you are not a patient, please encourage your loved one with Castleman disease to complete this brief survey.
- ...ALSO, RIGHT NOW: Be sure that you have joined the CDCN community of patients and loved ones with Castleman disease as a patient as well at:
- ...IN A COUPLE OF MONTHS: In a few months, we will establish a biobank called CastleBank. We will collect tissue samples from Castleman disease patients and send them to top researchers. Participation in these studies is easy. Patients will be asked to mail a blood or spit sample, and patients will be asked to have their hospital share excess samples from a previous biopsy. Patients may also be asked to share their medical records so researchers can review the data to better understand the disease. Learn more information about donating tissue samples.
- ...IN THE FALL: Looking ahead to Fall 2016, we will also establish the ACCELERATE Natural History Registry. We invite all patients, parents of pediatric patients, children of adult patients, family members and loved ones of deceased patients to enroll. The purpose of this registry is to gather medical data from patients and families to examine the history of Castleman disease, its treatment, and outcomes. Learn more about ACCELERATE!
This is a tough battle, but the answers are within each of us. If we all play our part, we will find a cure for this terrible disease once and for all!