CDCN Newsletter - April 26, 2017
Accelerating Research & Treatment for Castleman Disease
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April 2017
Diagnostic Guidelines Published and Being Used to Diagnose Patients

The first-ever diagnostic criteria for idiopathic multicentric Castleman disease (iMCD) has now been published in the top hematology journal in the world, Blood!

Though Castleman disease was first described in 1954, this is the first time there has ever been a diagnostic criteria for it. The CDCN is incredibly proud of this accomplishment; this criteria, which the CDCN worked on for the last two years, will help to speed up time to diagnosis and, more importantly, time to administration of life-saving treatments. For the full journal article,
click here. For a summary, click here.  
CDCN is thrilled to announce a research collaboration with Janssen to conduct a Proteomics Study of Idiopathic Multicentric Castleman Disease

"The aim of this study is to identify molecules whose levels are specifically altered in the blood of iMCD patients. The hope is that these molecules can be used to shorten the time required to diagnose iMCD for critically ill patients and as therapeutic targets for treatment of iMCD patients that do not respond to current therapies. To accomplish these goals, the collaborators will measure the level of approximately 1,300 analytes in more than 260 serum samples collected from approximately 100 iMCD patients at various time points during active disease." To read the full press release, please visit:

CDCN Swag now available for purchase!

The CDCN has launched sale of CDCN T-shirts! Shirts are $26 - $30 and ~35-40% of the cost will be donated directly to support high-impact CDCN research. Kids, womens and mens XS through XL T-shirt sizes are available. To purchase CDCN T-shirts, please click here or the image below! 

Join us in Philadelphia to ride and raise money for a Castleman disease cure!

Don't forget to sign up for the Million Dollar Bike Ride coming up on May 20, 2017! Not ready to ride? Help turn promising into permanent cures by donating to the Castleman disease team! All donations to the Castleman disease Million Dollar Bike Ride team will be matched dollar-for-dollar by the Penn Medicine Orphan Disease Center. Funds raised from this event will go directly to high-impact research for Castleman disease.  

Please visit to sign up for the ride!
Make your donation count DOUBLE by donating to the Castleman team Million Dollar Bike Ride Giving Page! With your support we can beat Castleman Disease. Click here to donate! 

On April 4, 2017, the Huffington Post published an article highlighting the the progress made by the CDCN and the work that lies ahead. Read the full article and watch the video here: 

Don't forget to share this article with your family and friends! 
Remembering the 3rd Annual Patient Summit

On November 4, 2016, fifty patients and their loved ones from all over the United States as well as Germany, Japan and Australia traveled to Philadelphia for the third annual Patient Summit. Patients were given a unique chance to share their stories in a supportive forum, and to participate in activities aimed at furthering awareness and research. This gathering – the only one of its kind happening for Castleman disease patients – gives participants the opportunity to learn the basics about this rare disease, what resources are available, including treatment options and emotional support, and to learn about the future direction for Castleman disease research. To read more about the Patient Summit, please visit: 

Go to or click below to check out our NEW video about the Patient Summit!

Just joined the CDCN? Or want to learn about our accomplishments and plans for the future? You can learn about how the CDCN got started, the progress we've made since 2012 and our plans for 2017 by checking out our new Community Update here!

Support CDCN by shopping on AmazonSmile!

Amazon users can support the CDCN through their purchases with AmazonSmile, at no cost to you. When you shop at AmazonSmile, you’ll find the exact same low prices, vast selection and convenient shopping experience as usual with Amazon, with the added bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization. Click here to learn more.

On your first visit to AmazonSmile (, you will need to select "Castleman's Awareness & Research Effort" (CDCN's official legal name) to have donations made from eligible purchases before you begin shopping. Amazon will remember your selection, and then every eligible purchase you make at will result in a donation towards Castleman disease research!

We have made incredible progress, but have life saving work that needs funding. With your support we can beat Castleman Disease! Until May 20th, you can make your donation to count DOUBLE by donating here to the Castleman disease Million Dollar Bike Ride Giving page! See MDBR description above for more details.

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