Webinar: Innovative Approaches to Improving Your Rare Disease Care

Date: Thursday, August 27

Time: 3-4 p.m. ET

Location: This is a virtual event and will be held on Zoom.

In an era of scientific and technological advances, rare disease care is changing every day. Join us for a robust panel discussion diving into different approaches to navigate and improve your rare care throughout each step of your journey.

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Speakers

Marybeth McAfee, MA, GC (Moderator)

Vice President, Community & Medical Affairs

National Organization for Rare Disorders

Michael Kraft, MD

Vice President, Clinical Performance and Operational Excellence; Assistant Professor Family and Preventative Medicine

Emory University Hospital and Emory School of Medicine

Jessica Contreras

Patient Advocate, Clinical Trial Recipient

Desmoid Tumor

David Flannery, MD

Director of Telegenetics and Digital Genetics Center for Personalized Genetic Healthcare; Professor of Molecular Medicine

Cleveland Clinic and Cleveland Clinic Lerner College of Medicine

Soo Shim, MS, MBA, LCSW

Social Worker

Edwards Family Division of Genetics and Rare Diseases Ann & Robert H. Lurie Children's Hospital of Chicago