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Our Team

The Orphan Disease Center includes a passionate team of scientists and professionals who are committed to accelerating research, developing therapies, and bettering the lives of those living with a rare disease.

It is with extensive experience, heartfelt dedication and enthusiasm that our team strives to meet the needs of a grossly underserved community.

Center Staff

 
Clinical Director

Interim Director

Director, CDKL5 Program of Excellence

Director, CDKL5 Program of Excellence

Director, Program of Excellence in MPS Diseases

Director, Program of Excellence in MPS and Lysosomal Storage Disease Advanced Therapies

Director, JumpStart

Eric Marsh, MD, PhD

Daniel J. Lavery, PhD

Deborah Requesens, PhD

Cara M. Weismann, PhD

 
 
Director, Programs and Community Engagement

Director, Programs and Community Engagement

Associate Director, Patient Impact

Associate Director, Patient Impact

Program Manager

 
 

Samantha M. Charleston

David Fajgenbaum, MD, MBA, MSc

Jasmine L. Carter, PhD

 
 

Clinical Research Coordinator, CDKL5 Registry

Program Specialist

 
 

Theresa E. Berger, MBE

Leslie Silverman

Steering Committee

 

Jonathan A. Epstein, MD

University of Pennsylvania

Michael S. Parmacek, MD

University of Pennsylvania

Glen N. Gaulton, PhD

University of Pennsylvania

Daniel J Rader, MD

Committee Chair

University of Pennsylvania

Frances Elizabeth Jensen, MD, FACP

University of Pennsylvania

Joseph W. St. Geme, III, MD

Children's Hospital of Philadelphia

Kevin B. Mahoney

University of Pennsylvania Health System

Susan Furth, MD, PhD

Children's Hospital of Philadelphia

External Advisory Committee

 

Christopher P. Austin, MD

Flagship Pioneering

John F. Crowley, JD, MBA

Amicus Therapeutics

Troyen Brennan, MD

Pat Furlong

Parent Project Muscular Dystrophy

Arthur L. Caplan, PhD

New York University

Marlene Haffner, MD, MPH

Haffner Associates, LLC, Orphan Solutions

Stanley N. Cohen, MD

Stanford University

Annalisa Jenkins, MBBS, FRCP

Committee Chair