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2018 International Degos Disease Symposium
NIH Clinical Center
10 Center Drive, Bethesda, MD 20814
Description

The first International Degos Disease Symposium is scheduled to occur Friday, April 27th, 2018, at the NIH Clinical Center Building 10 in the FAES Conference Rooms 3 & 4 on the National Institutes of Health (NIH) Campus in Bethesda, Maryland. This Symposium will provide a forum for clinicians and patients to come together in an environment focusing on research and the clinical aspects of Degos Disease. The symposium agenda will incorporate patient-centric topics that focus on the many challenges faced by clinicians, researchers, and patients. Planned topics include progress made, next steps, and critical questions that need to be addressed. The Symposium will be held at the NIH Clinical Center.

Agenda

8:00 a.m.
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Opening Remarks
Manfred Boehm, M.D.

8:05 a.m.
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Welcome to NIH NHLBI
Richard Childs, M.D.

8:15 a.m.
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Keynote Address-Physician, Epidemiology, Classification and Prognosis of Atrophic Papulosis (Degos Disease)
Christos Zouboulis, M.D.

8:45 a.m.
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Keynote Address-The Degos Journey: A Historical Perspective
Judith Calder

9:15 a.m.
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Perspective
Roger Chari

9:30 a.m.
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The Pathology of Degos Disease - A Window to Pathogenesis
Cynthia Magro, M.D.

9:55a.m.
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Patient and Family Engagement in Research Efforts
Sandra Clancy, Ph.D.

10:10 a.m.
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Vasculopathy and Degos: Potential insights from Systemic Sclerosis
Zsuzsanna McMahan, M.D.

10:35 a.m.
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Break

11:00 a.m.
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Patient / Family Presentation
Dina Lefkowitz

11:15 a.m.
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Degos Disease in Pediatric Patients
Patrick Whelan, M.D.

11:40 a.m.
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Susac Syndrome: On Neuro-Imaging and Pathology
Rula Hajj-Ali, M.D

12:05 p.m.
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Degos vs. Degos-like Skin Diseases
Edward Cowen, M.D. (NIH/NIAMS)

12:30 p.m.
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Lunch

1:55 p.m.
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Cardiovascular Manifestations of Atrophic Malignant Papulosis (Degos Disease)
Douglas Rosing, M.D. (NIH/NHLBI)

2:20 p.m.
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Hope
Theresa Slayton

2:45 p.m.
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Treprostinil: More Than a Vasodilator Therapy
Prof. David Smadja

3:10 p.m.
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Break

3:30 p.m.
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The Evolution of and Limitations of Current Therapy of Systemic Degos (MAP)
Lee Shapiro, M.D.

3:55 p.m.
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RA101495 - A Novel Subcutaneous C5 Inhibitor for the Treatment of Complement-Mediated Disorders
Ramin Farzaneh-Far, M.D., FACC

4:20 p.m.
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Vascular Changes and Genetics in Degos and Degos-like Diseases
Manfred Boehm, M.D.

4:55 p.m.
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Concluding Comments
Lee Shapiro, M.D.

5:15 p.m.
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Adjourn