CDCN Monthly Newsletter - July 12, 2016
Accelerating Research & Treatment for Castleman Disease
View this email in your browser
July 2016

"Roar for a Cure" on July 23 to honor the beautiful life of Elyse, who passed away while battling CD when she was 13 years old  

ELYSESTRONG is holding its annual "Roar for a Cure" ride in memory of Elyse Driscoll. Elyse was an incredible 13 year old girl, who inspired everyone who met her and she continues to inspire many since share passed away. The event will raise funds for research by the CDCN to answer the unknowns of Castleman's disease (CD) and save future lives. The event will be held on July 23 at 8AM in Marlborough, MA. It is being organized by her parents Nick and Kim Driscoll. Kim is also the 2015 winner of the CDCN's Castleman Warrior Award and an amazing person. If you can't attend, please consider donating in memory of Elyse by clicking here. For more information, click here.
SAVE THE DATE: 'Beating Castleman's, Together' Patient/Loved one Summit: November 4-5 in Philadelphia, PA!
The CDCN will host the 3rd annual "Beating Castleman’s Together" Patient/Loved Ones Summit on November 4-5 in Philadelphia, PA. Patients, loved ones, physicians, and researchers will come together to connect and learn about Castleman's, up-to-date research, and ways to join the fight to advance research and treatments. There will also be a fun, community-building event on November 5. Click here for more information.

SAVE THE DATE: 'Quest for a Cure' Gala for Castleman's disease: November 4 in Philadelphia, PA! 
The CDCN is also hosting the 2nd annual "Quest for a Cure Gala" on Friday, November 4 in the University of Pennsylvania Jordan Medical Education Center in Philadelphia, PA. Last year was a huge success - we had a great turnout of 200 supporters including physicians, patients, loved ones, and Philadelphia-community members. More details to come! Stay updated by checking

6ABC runs story on CDCN and bill that could lead to dozens of treatments for rare diseases!

Click above or here to watch!

The CDCN's patient-centered, 'Collaborative Network' approach has led to tremendous progress, and we need your help to continue towards a cure!

The CDCN has taken a unique approach that is more collaborative, strategic, patient-driven, and efficient than the traditional approach taken by rare disease organizations, which has several limitations and drawbacks. The CDCN overhauled the process and created a new framework for rare disease research.
Learn more about how the "Collaborative Network" approach is speeding up breakthroughs against Castleman’s by clicking here.

We've engaged patients in research from day 1 and recently launched a site for patients/loved ones to post their most burning questions about the disease and vote for other questions that you think are important for the CDCN to make sure that research is geared towards answering them. Learn more about how you can contribute your ideas and votes here and fill out the google form for access to the site. 

We've made incredible progress! Our research has turned the previous understanding of CD on its head, and we have a very ambitious International Research Agenda that is being executed. We've connected over 350 physicians and researchers as well as over 6,000 patients and loved ones. Read more about what the CDCN is working on and how you can get involved here or donate here.

CDCN co-founders, Fajgenbaum and van Rhee, published a new model of pathogenesis for idiopathic multicentric Castleman disease (iMCD) and new classification system for CD that has turned the previous understanding of iMCD on its head. For more info, click here.

Rather than following the traditional biomedical research organization's approach of raising funds and encouraging researchers to apply to use the funds how they see fit, the CDCN is taking a new approach that is strategic, collaborative, and expert consensus-based. Listen to Dr. Fajgenbaum's talk about this new approach by clicking here or below.

Copyright © 2016 CDCN, All rights reserved.

unsubscribe from this list    update subscription preferences