The Fifth Annual Patient & Loved One Summit was held at the Hospital of the University of Pennsylvania in Philadelphia, PA on Friday and Saturday, September 21-22, 2018. The Summit enabled patients and loved ones from around the world to connect with one another to learn about their disease, up-to-date research, and ways to join the fight to advance research and treatments. Check out our story about it here!

Information about the 2019 Patient & Loved One Summit will be available in early 2019. In the meantime, take a look at the 2018 Summit agenda and guest expert panelists below!

2018 Summit Agenda

Meet our Expert Panelists from the Summit!

Dr. Wilbur Bowne, M.D., FACS

Wilbur B. Bowne, M.D., FACS, is a Professor of Surgical Oncology and Biochemistry/ Molecular Biology at Drexel University College of Medicine (DUCOM) and serves as Chief of Gastrointestinal Surgery (Pancreatic and Gastrointestinal Oncology). He is founder and principal investigator of The Laboratory of Cellular and Molecular Therapeutics in DUCOM Department of Surgery. Dr. Bowne completed surgical training at Mount Sinai School of Medicine and research/surgical oncology fellowships at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York. He is the recipient of The American Association of Cancer Research (AACR) Young Investigator and The American College of Surgeons Faculty Fellowship Research Awards. Dr. Bowne’s laboratory research is focused on developing novel anti-cancer targeted therapies against oncoprotein and cell cycle regulation including drug delivery platforms in pancreatic and advanced abdominal malignancies. He is extensively published with over 200 peer-reviewed articles, abstracts and book chapters. He has received numerous awards for outstanding service, teaching excellence with outstanding skills and commitment in the clinical care of patients. Dr. Bowne has nearly twenty years of experience researching and treating patients with Castleman’s disease (CD). In 1999, while at MSKCC, he authored a paper published in the Journal- Cancer discussing the management of unicentric and multicentric CD. Since then, Dr. Bowne has co-authored several articles focusing on site-specific management of unicentric CD. Dr. Bowne takes great pride in being a member of DUCOM multidisciplinary cancer team that treats the most complex patient situations whatever the circumstances or nature of the condition.

Dr. Eric Oksenhendler, M.D., Ph.D.

Eric Oksenhendler is a Professor of Clinical Immunology in Hôpital Saint-Louis and Université Paris-Diderot and Head of the Department of Clinical Immunology. He has been involved in Castleman disease clinical care and science since the 1990s with an initial focus on patients with CD in the context of HIV infection. Dr. Oksenhendler has publications on the First series of HIV-associated MCD; Discovery of HHV-8 as the infectious agent responsible for this peculiar MCD; Description of the Immunological and Virological phenotype of this disease; Description of the high risk of lymphoma in this population; Efficacy of Rituximab in HHV-8 associated MCD; and Description of HHV-8 MCD in the general HIV-non-infected population. He joined the CDCN in 2012 and became a member of the Scientific Advisory Board, mainly involved in clinical care. He has helped to initiate a French national registry for all types of CD ( > 320 patients / August 2018), which was certified in 2017 as the French National Reference Center for Castleman Disease in the context of the National Rare Diseases program. He has led the efforts for the publication of the first data on the national registry and joined the ACCELERATE registry in September 2018. Dr. Oksenhendler’s current research fields include UCD: Clonality and NGS on the FDC, Pathophysiology of associated Pemphigus; iMCD: Involvement of the Tfh cells; HHV-8 associated MCD: Characterization of the infected cells, experimental B cell infection. 

Dr. Frits van Rhee, M.D., Ph.D., MRCP, FRCPath


Frits van Rhee, MD, PhD, is a Professor of Medicine and Clinical Director of the UAMS Myeloma Center. He earned his medical degree from Erasmus University, Rotterdam, Netherlands and his PhD at the Imperial College of Science, Medicine and Technology, University of London. Dr. van Rhee trained in Internal Medicine and Hematology in the UK, and in Bone Marrow Transplantation at John Radcliffe University Hospital in Oxford and the Royal Postgraduate Medical School in London. He holds the Charles and Clydene Scharlau Chair for Hematological Malignancies. 
Dr. van Rhee is a leading expert in multiple myeloma and other hematologic malignancies, with a research focus in immunotherapy. Dr. van Rhee is also an international expert on Castleman Disease, with one of the largest populations of Castleman Disease patients in the world.
Dr. van Rhee is a member of the International Society for Cellular Therapy, the International Society for Experimental Hematology, the European Group for Bone and Marrow Transplantation, the Royal college of Physicians (UK), the Royal College of Pathologists (UK), and the American Society of Hematology. He has UK board certification in Internal Medicine and Hematology.

The Fourth Annual Patient & Loved One Summit, sponsored by Janssen Pharamceuticals, was held in Philadelphia, PA on September 15-16, 2017. Read more about the 2017 Summit weekend here.