**UPDATE: Thank you to those of you who have participated in our patient driven research initiative!**

**To participate in our patient drive research initiative, please fill out this Google form.

We launched a patient driven site in which you can post your most burning questions about the disease and vote for other questions that you think are important. This is a great way for you to contribute to the important research that is going on at the CDCN. If you’re interested in participating, fill out this Google form so we can invite you to contribute in the site. Remember, your input could help us find a CURE for Castleman’s! 

The CDCN used these questions to make sure that our research is geared towards answering them. Dr. David Fajgenbaum answered the top questions asked by patients and provided an update on how our research is answering your questions in the first webinar on August 29th, 2016, which is also available on our Youtube channel at https://youtu.be/jubolTp514Y!

Comments

  1. Amanda Gonzalez's avatar
    Amanda Gonzalez
    | Permalink
    I would love to be a part of this. I was diagnosed with Castleman's disease a few months ago. My case is only the 3rd my Oncologist/Hematologist has seen in 20 years of practice so he's not real sure how to proceed with it beyond doing a follow-up scan in 6 months. My scan after the removal of my two enlarged lymph nodes in my armpit didn't show any others in my body, but it now looks like I have another one in the same armpit, 2 months later. The surgeon did note that all of my lymph nodes were very 'colorful', due to my tattoos on my back. They had all absorbed tattoo ink I guess. I am just wondering if this might be a contributing factor for some people?
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