Castleman Disease Collaborative Network

It was an incredible honor to accept the Vision of Hope Award at the 2024 Stand Up to Sarcoma Gala on behalf of my teams at the University of Pennsylvania, the Castleman Disease Collaborative Network and Every Cure Angiosarcoma hits especially close to home for me and my family, as my uncle was diagnosed with this devastating disease and given a grim prognosis. Fortunately, we were able to repurpose a drug that had never been used for his condition before—and it saved his life. Now, after 8 years of remission, I had the privilege of watching him walk his son (my cousin) down the aisle at his wedding just a few weeks ago. Moments like these remind me why we do what we do. At Every Cure, we’re committed to finding more life-saving opportunities like this one so patients like my uncle aren’t told, ‘we’ve tried everything’ when there’s a life-saving cure sitting on the pharmacy shelves.

The CDCN is excited to announce the launch of our brand new community newsletter series! Warrior World is your source for the latest news and highlights, including features on members of the Castleman disease community, research updates, event information and more. Warrior World will be shared via email and available on our website—so don’t miss out! Look for our inaugural edition in your email box today, or visit cdcn.org/warrior-world to read it and subscribe to our general mailing list. 💙 #CDCN #CastlemanDisease #Castleman #CureCastleman #PatientStories

Hot off the Press! 🗞️ 📣 Researchers have discovered abnormal blood cell production, known as extramedullary hematopoiesis (EMH), occurring in the lymph nodes and spleens of some idiopathic multicentric Castleman disease (iMCD) patients. They believe the inflammatory protein IL-6, which is closely linked to iMCD, plays a key role in driving this process. This is the first-ever report of EMH in iMCD patients and offers promising new insights into the cause and diagnosis of this rare disease. Click here to learn more: https://lnkd.in/eZ-5YWn7. #CastlemanDisease #CDCN #CureCastleman #CastlemanResearch #NewPublication #RareDiseaseResearch

The Castleman Disease Collaborative Network and my Center at Penn are currently searching for several key positions! We're looking for people who are passionate about making an impact and contributing to groundbreaking research in rare diseases to join our team in the following roles: - CDCN Scientific Director (PhD, to work with physicians and researchers around the world to develop and advance a collaborative research strategy): https://lnkd.in/esaswVRH - Coming Soon: Director of Strategy & Admin (or "Chief of Staff") in the Center for Cytokine Storm Treatment & Laboratory at Penn - to partner with me as my right-hand person. MS, MBA, or PhD. If you’re interested, email me at davidfa@pennmedicine.upenn.edu - Biomedical Leadership Fellow (MD student taking a year out to lead and contribute to a wide range of biomedical projects and initiatives): https://lnkd.in/et5y22ir - CDCN Program Coordinator: https://lnkd.in/eagqw9fp Know someone who might be a good fit? Please share this post or tag them below! More info here: https://lnkd.in/ehwdxbSx #Hiring #JobOpportunity #CDCN #CastlemanDisease #HealthcareJobs #JoinOurTeam #RareDiseases

We are proud to announce that Co-Founder David Fajgenbaum, MD, MBA, MSc is being honored with the Vision of Hope Award by the Sarcoma Foundation of America tomorrow at the Stand Up to Sarcoma Gala in New York City! https://lnkd.in/eYVc4mkx

I am so honored to be accepting the WebMD Health Hero Award on behalf of my teams at the University of Pennsylvania School of Medicine, Castleman Disease Collaborative Network, and Every Cure. Congrats to Regina Barzilay and Suchi Saria who also received the award! Link here: https://lnkd.in/eYHnd7-R

The CDCN is growing, and we’re thrilled to announce that we have new opportunities to join our passionate, mission-driven team! If you’re looking to make an impact in the rare disease community and contribute to life-saving work, this could be the perfect fit for you. Visit our website to learn more about the roles and apply today! https://lnkd.in/eeS6BJHZ #CastlemanDisease #CDCN #CureCastleman #JoinOurTeam #RareDisease #JobPosting

The Center for Cytokine Storm Treatment and Laboratory (CSTL) at the University of Pennsylvania is the first center integrating top-notch clinical care, clinical trial opportunities, and basic, translational and clinical research for Castleman disease in the US. The CSTL (pronounced “castle”) is fully integrated with the CDCN to create a uniquely collaborative environment where scientific research and world-class patient care occur hand in hand, and optimal treatment approaches are directly informed by the patient experience. David Fajgenbaum, MD, MBA, MSc, serves as cofounder and president of the CDCN, as well as founding director of the CSTL. Both teams work together closely in Philadelphia, meeting frequently and sharing resources through this exceptionally efficient and distinctive partnership. #CDCN #CastlemanDisease #CureCastleman #RareDiseaseResearch #CastlemanFlex #WarriorFlex

There’s less than ONE WEEK left to apply for this opportunity! Team Castleman raised an incredible $58,775 through the Penn Orphan Disease Center’s 2024 Million Dollar Bike Ride, which will support a Castleman disease research grant. If you’re a researcher or physician, don’t miss this chance to apply for a one-year grant to advance Castleman disease research. LOI applications are due by Friday, September 20, 2024, at 8:00 pm ET. Learn more and apply here: https://lnkd.in/dcf6PbhP. #CastlemanDisease #RareDiseaseResearch #CDCN #MDBR2024 #CureCastleman

Exciting News! The 5th edition of the WHO Classification of Haematolymphoid Tumours is available online, and for the first time ever, it includes a section dedicated to Castleman disease. The WHO Classification of Haematolymphoid Tumours is the international standard for diagnostic haematopathology practice worldwide and forms the basis for the translation of cancer research into practice. This recent edition was led by several esteemed members of the CDCN Scientific Advisory Board, including Amy Chadburn, MD, David Fajgenbaum, MD, MBA, MSc, and Megan Lim, MD, PhD. Check out this comprehensive resource to learn more about the diagnosis and treatment of Castleman disease. Access it now at WHO Classification or find more information about ordering the upcoming print version!  https://lnkd.in/dT5mB8aV #CastlemanDisease #CDCN #CureCastleman #Castleman #RareDiseaseResearch