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Session Chair(s)
Martine Zimmermann, PHARMD
Senior Vice President, Head of Global Regulatory Affairs
Ipsen , France
Learning Objective : Discuss how registries have been identifies as high priorities by governing bodies; Explain how this translates into increased collaborating to foster development and access to new medicine for rare diseases.
Speaker(s)
Public-private Partnerships for Registries: Challenges and Solutions
Samantha Parker, MBA
Orphan Europe, France
Director of External Affairs and Rare Disease Partnerships
Urea Cycle Disorders as a Model of Rare Disease Registries
Marshall Lynn Summar, MD
Children's National Medical Center, United States
Division Chief, Genetics and Metabolism; Director, Rare Disease Institute
FDA Perspective
Larissa Lapteva
FDA, United States
Associate Director, Division of Clinical Evaluation, OTAT, CBER
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