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.
Vice President, Community & Medical Affairs
National Organization for Rare Disorders
Vice President, Clinical Performance and Operational Excellence; Assistant Professor Family and Preventative Medicine
Emory University Hospital and Emory School of Medicine
Patient Advocate, Clinical Trial Recipient
Desmoid Tumor
Director of Telegenetics and Digital Genetics Center for Personalized Genetic Healthcare; Professor of Molecular Medicine
Cleveland Clinic and Cleveland Clinic Lerner College of Medicine
Social Worker
Edwards Family Division of Genetics and Rare Diseases Ann & Robert H. Lurie Children's Hospital of Chicago