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Our Mission

To provide research information, clinical points of contact, and cancer treatment facilities  to those patients of "Castleman's Disease" and the patients families.


About Castleman's  

Castleman's Disease is a rare disorder characterized by non-cancerous (benign) growths (tumors) that may develop in the lymph node tissue throughout the body (i.e., systemic disease [plasma cell type]). Most often, they occur in the chest, stomach, and/or neck (i.e., localized disease [hyaline-vascular type]). Less common sites include the armpit (axilla), pelvis, and pancreas. Usually the growths represent abnormal enlargement of the lymph nodes normally found in these areas (lymphoid hamartoma). There are two main types of Castleman's Disease: hyaline-vascular type and plasma cell type. The hyaline vascular type accounts for approximately 90 percent of the cases. Most individuals exhibit no symptoms of this form of the disorder (asymptomatic) or they may develop non-cancerous growths in the lymph nodes. The plasma cell type of Castleman's Disease may be associated with fever, weight loss, skin rash, early destruction of red blood cells, leading to unusually low levels of circulating red blood cells (hemolytic anemia), and/or abnormally increased amounts of certain immune factors in the blood (hypergammaglobulinemia).

A third type of Castleman's Disease has been reported in the medical literature. This type may affect more than one area of the body (multicentric or generalized Castleman's Disease). Many individuals with Multicentric Castleman's Disease may exhibit an abnormally large liver and spleen (hepatosplenomegaly). Researchers' opinions in the medical literature differ as to whether Multicentric Castleman's Disease is a distinct entity or a multicentric form of the plasma cell type of Castleman's Disease.


Contact Information

Foundation
        Castleman's Disease Organization
          c/o Castleman's Disease Reserve Account
        Bank of America, St Michaels Drive
        Santa Fe, New Mexico  87505
        (505) 473-8211

Executive Director
        Jim Johnston

        Santa Fe, New Mexico

Medical Director
        Bart Barlogie, MD, PhD
       
Myeloma Institute for Research and Therapy
        The University of Arkansas for Medical Sciences
        Little Rock, Arkansas

International Medical Director
        Norihiro Nishimoto, MD, PhD

        Professor
        Graduate School of Frontier Biosciences
        Osaka University;  Osaka, Japan

Clinical Director
        Frits vanRhee, MD, PhD, MRCP (UK), FRCPath

        Myeloma Institute for Research and Therapy
        The University of Arkansas for Medical Sciences
        Little Rock, Arkansas  

Associate Clinical Director
       Corey Casper, MD, MPH
      
University of Washington; Virology Research Clinic
       Seattle, WA

CD Legal Counsel
        Douglas M. Mancino
        McDermott Will & Emery LLP
        Los Angeles, CA

CD Research Study Coordinator
        Enric Morello

        University of Washington; Virology Research Clinic
        Seattle, WA

Members at Large
        W. Robert Lange, MD, MPH
       
Roche Pharmaceuticals

        Jerry Zeldis, MD, PhD
        Celgene Corporation

Affiliates
        Myeloma Institute for Research and Therapy
       
University of Arkansas for Medical Sciences

       
Frits vanRhee, M.D., Ph.D.

        Little Rock, AR

        Celgene Corporation
        Summit, NJ

        Dana Farber Cancer Institute
        Nikhil Munshi, M.D.

        Boston, MA

       Fred Hutchinson Cancer Research Center
       Corey Casper, M.D., MPH
        Seattle, WA

        Osaka University
        Norihiro Nishimoto, MD, PhD
        Osaka, Japan

        Roche Pharmaceuticals
        Switzerland


Electronic mail
        Castleman's Webmaster 

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