Castleman Disease Collaborative Network

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

I've had the privilege of working closely with Sally Nijim for the past year, where she's served as the 2024 CDCN and PennMed Biomedical Leadership Fellow and Chief of Staff to me. Sally's dedication, brilliance, and work ethic have been truly remarkable, making her one of the most impressive medical students I've ever worked with. After taking a year out from her MD at Penn to work with me, Sally is now pursuing her MBA at Wharton. Recently, she received two prestigious awards that highlight her exceptional contributions to medical research that I wanted to share. Sally won the Best Research Presentation award at The BRAIN Foundation Annual Meeting for her important work on TCF7L2-related neurodevelopmental disorder (TRND), a newly described rare disease in need of solutions. Additionally, she was selected by the American Society of Hematology for the 2024 HONORS Award in recognition of her significant work on Castleman disease. Beyond these achievements, Sally has led several projects and been a valuable member of teams at Every Cure, CDCN, and my Center at Penn. I look forward to our continued collaboration as she completes her MD/MBA at Penn & Wharton and can't wait to follow her future accomplishments. For those interested in joining our teams, we are currently considering applications for: - Biomedical Leadership Fellow (current MD students taking a year off): https://lnkd.in/eJiADT3g - Postdoctoral Fellow in my Center at Penn: https://shorturl.at/xgES3 - Every Cure Research Fellow (MD, PharmD, or PhD + 3-5 years experience): https://lnkd.in/eHDfKVtR And I’ll soon be opening a Chief of Staff / Associate Director-type role who will be my right-hand person across all three organizations. If you’re interested in learning more, email me at davidfa@pennmedicine.upenn.edu

So excited to see Castleman Disease Collaborative Network Co-Founder & President David Fajgenbaum, MD, MBA, MSc selected as one of 10 National Academy of Medicine emerging leaders in health and medicine!

Exciting news for the Castleman disease community! 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/d89PSEcZ. #CastlemanDisease #Castleman #RareDiseaseResearch #CDCN #MDBR2024 #CureCastleman

Tune in to hear Dr. David Fajgenbaum, MD, MBA, MSc and CDCN community member Gary Gravina on the latest episode of Symptomatic with Lauren Bright Pacheco. Gary shares his powerful story of being diagnosed with Castleman disease and nearly losing his life - until Dr. Fajgenbaum helped find a cure through drug repurposing. Don't miss this inspiring podcast episode! #CastlemanDisease #CDCN #PatientStory #CastlemanWarrior #CureCastleman #SymptomaticPodcast

We love repurposing too! And love the awareness being raised for Castleman disease!

I am so impressed by Sally Nijim and the incredible work that she has led over the last year as she’s served as my Chief of Staff and Biomedical Leadership Fellow! She has helped to accelerate progress for the Castleman Disease Collaborative Network, Every Cure, and my Center at University of Pennsylvania Perelman School of Medicine including helping to define a relatively new rare neurodevelopmental disorder called TCF7L2-related neurodevelopmental disorder. Was so proud to see her recognized as the top presenter at the The BRAIN Foundation annual meeting! Can’t wait to follow her progress - and find more ways to work together - as she completes her MD/MBA at Penn and Wharton!

In honor of World Castleman Disease Day on July 23, I wanted to share some recent controversy… Castleman disease was thought to be first described by Benjamin Castleman in 1954 — laying the foundation for future discoveries that enabled me to saved my life while #chasingmycure — but a recent paper came out indicating that Dr. Edwin LeCount may have actually first described it in 1899! Should it be called LeCount’s disease?!? Have we been doing #CastlemanFlexes when we should have been doing #LeCounts all these years?!? Regardless of if this is true, I’m still so grateful for Dr Castleman! #chasingmycure Castleman Disease Collaborative Network

Because Castleman disease is rare, and mimics so many other diseases, it can take several weeks, months, or even years before patients receive an accurate diagnosis. Many become critically ill, and without a diagnosis, their medical teams cannot prescribe any of the potentially lifesaving treatments the CDCN continues to develop. For some patients, by the time a diagnosis comes, it's too late. In recognition of World Castleman Disease Day today, July 23, the CDCN is raising awareness and funds to enable the development of a diagnostic test that can identify CD and save thousands more lives. If you wish to make a gift in honor of World CD Day, please text CDDAY2024 to 41444 or visit https://lnkd.in/eYwe_hEU. Thank you for joining us in turning hope into action! #WorldCastlemanDiseaseDay #WorldCDDay #CDCN #Castleman #CastlemanDisease #CureCastleman #RareDiseaseResearch

Please join the Castleman Disease Collaborative Network in congratulating Bernie Prazenica, President and General Manager of 6abc WPVI-TV Philadelphia, for being named the 2024 recipient of our Glen de Vries Community Member of the Year Award. Bernie has been involved in the fight against Castleman disease before the CDCN was even established and became the first member of our Advisory Council, where he still serves. Over the years, he has continued to support our mission in countless and deeply meaningful ways, and our organization is all the better because of him. Bernie was honored at our annual Quest for a Cure fundraiser on May 9, where we presented him with this incredibly well-deserved award. Thank you, Bernie, for all you do for the CDCN community!