Castleman Disease Collaborative Network

We are so excited to announce that Dr. Fajgenbaum's memoir Chasing My Cure: A Doctor’s Race to Turn Hope Into Action will be available in paperback tomorrow, Tuesday, January 26! His incredible story about battling Castleman disease and discovering a treatment that is saving his life has made a difference in the lives of so many! It’s also a universal tale about getting up and fighting back after life knocks us down. We hope that it will continue to inspire readers to turn ...their hope into action and raise awareness about Castleman disease. We hope you'll pick up a copy of Chasing My Cure today for yourself or a loved one from your local bookstore or Amazon at https://www.amazon.com/dp/1524799637/ #ChasingMyCure #curecastleman #hopeintoaction

One of the most impactful ways to contribute to our fight to end CD is by enrolling into the global Castleman disease registry, ACCELERATE! In just 15-20 minutes, CD patients and family members of deceased patients can enroll online at www.CDCN.org/ACCELERATE. Our team analyzes the medical information you share to identify patterns that can improve treatment and care. We also have the unique ability to learn from any patient who has been infected with SARS-CoV-2 or has received a SARS-CoV-2 vaccine. We can learn a great deal from these patients as well! Message us or [email protected] for more information.

Join us for a (virtual) Community Update on Thursday, January 28th at 6:00pm EST, hosted by Dr. David Fajgenbaum and Mileva Repasky on Zoom and Facebook live. This is the second in a series of gatherings that will connect Castleman disease patients and loved ones around the globe for updates on our fight against CD. We will share major milestones from2020, research updates that benefited members of our community, and our new ‘All-in Movement’ project. Of course, we want to hear your questions and will hold an Ask Us Anything session. Register at: https://docs.google.com//1FAIpQLSf3uWfKJRWC9T8w5/viewform

Over the last few months, we have received many questions regarding whether or not our Castleman disease patients should be vaccinated. We are thrilled to announce that the CDCN's Scientific Advisory Board has developed guidance regarding the vaccination of our Castleman disease patients. To read the guidance in full, please visit: https://cdcn.org//guidance-from-the-cdcn-scientific-advis/

We are so proud and grateful to our amazing team, all of the incredible patients who donated their medical data and samples, and our colleagues around the world for their dedicated work for the ACCELERATE study. We are thrilled that this ground-breaking and game-changing natural history registry was published today in Cell Reports Medicine so that it can serve as a model for other #Raredisease registries! www.CDCN.org/ACCELERATE