Physician Support Network

This group of medical leaders have been involved with diagnosing, treating, and/or doing research for Degos disease and other similar diseases.

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  • Lee Shapiro, MD

    Disease Foundation and Professor Emeritus at Albany Medical College. He received his bachelor’s degree magna cum laude from Yale University and his Doctor of Medicine from the College of Physicians and Surgeons (Columbia University). He did his residency and rheumatology fellowship training at the University of Pittsburgh, where he was mentored by three pioneers of scleroderma research: Drs. Gerald Rodnan, Thomas Medsger, and Virginia Steen.

    His more than 40-year career has been devoted to building a model of multidisciplinary care for individuals with scleroderma, fostering multidisciplinary research collaborations, and promoting awareness and understanding of scleroderma among health care professionals. Dr. Shapiro has authored and co-authored numerous medical publications and abstracts. He also served on the medical advisory board of the Scleroderma Foundation Tri-State for more than 30 years.

    In 2018, Dr. Shapiro co-chaired the international symposium on Degos Disease held at the National Institutes of Health (NIH) in Bethesda, Maryland. He continues to organize and co-chair quarterly Degos Disease research meetings with medical professionals from around the world.

    Dr. Shapiro has been honored for his tireless advocacy and compassionate treatment of patients affected by scleroderma and Degos disease. His accolades include being named the Scleroderma Foundation Doctor of the Year in 2016, receiving the Distinguished Physician Lifetime Achievement Award from the National Scleroderma Foundation in 2007, and being inducted into the CDPHP Physicians Academy, which recognizes physicians who serve as role models to their medical colleagues and who act as ambassadors in fostering the delivery of high-value health care.

    Steffens Scleroderma & Degos Disease Foundation
    P.O. Box 38037, Albany, NY 12203

    Phone: 518-396-5580

  • Elizabeth Kessler, MD

    Beth Kessler is a pediatric rheumatologist in Grand Rapids, Michigan. She is a graduate of Loyola University Chicago Stritch School of Medicine and completed her residency in pediatrics and fellowship in pediatric rheumatology at the Medical College of Wisconsin.

    She has witnessed the strength of the Degos Disease Foundation in optimizing care for patients with this rare disease. She is interested in the advancement of therapeutics and improving access to them.

    Michigan State University College of Human Medicine
    15 Michigan St NE, Grand Rapids, MI 49503

    Pediatric Rheumatology

    Phone: 616-267-2700

  • Manfred Boehm, MD

    Center for Molecular Research NHLBI–NIH
    10 Center Drive MSC1454
    Bethesda, MD 20892, USA

    Phone: 301-435-7211

    Languages Spoken: English and German

    Nurse Jessica Caidor, RN, BSN

  • Patrick Whelan, MD, PhD

    Patrick Whelan, MD, PhD, is Associate Professor of Pediatrics at UCLA, Adjunct in Molecular Microbiology & Immunology at USC, and Lecturer on Pediatrics at Harvard Medical School. He is a pediatric rheumatologist and coordinates care at UCLA for children with autoimmune encephalopathy and other neuroimmune disorders.

    He has been caring for children with Kolmeier-Degos disease since 2004 and is the author of the UpToDate chapters on KDD. He is a past president of the Los Angeles Pediatric Society and helps organize the society’s summer program for high school students interested in careers in pediatrics.

    He lectures in virology at USC and also teaches a Harvard undergraduate psychology course, “Music and the Mind,” on the evolutionary origins of musicality and the role of auditory processing in health and disease.

    UCLA Department of Pediatrics
    200 Medical Plaza, Suite 265
    Los Angeles, CA 90095

    Phone: 310-206-1826

  • Cynthia Magro, MD

    Weill Cornell Medicine
    Department of Pathology
    & Laboratory Medicine
    1300 York Avenue, F-309
    New York, NY 10065

    Phone: 212-746-6434

  • Christos Zouboulis, MD, PhD

    Director of the Departments of Dermatology, Venereology, Allergology and Immunology, Dessau Medical Center and Founding Professor of Dermatology and Venereology at the Brandenburg Medical School Theodor Fontane
    Auenweg 38
    06847 Dessau-Roßlau, Germany

    Phone: +49.340.5014000/1 (Secretary Ms. Engelmann)

    Languages Spoken: English, French, German and Greek

  • Sergey Yakushenko (Сергей Якушенко)

    Phone: +79601521422

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