Wednesday, February 28TH

 Saturday, MAY 19TH

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Patients as Partners and Drivers for Drug Development

A Partnership of Global Genes and the Penn Medicine Orphan Disease Center

Global Genes, in partnership with the Penn Medicine Orphan Disease Center, will be hosting the 3rd annual RARE Patient Advocacy Symposium in conjunction with the Million Dollar Bike Ride (MDBR) event in which teams supporting a variety of rare diseases ride to raise money for research projects that benefit their communities.

The symposium is open to all affected rare disease patients and caregivers who will come together for a full day program to learn, connect and be inspired. ┬áThis year’s program will focus on rare disease research, drug development, and the patient advocacy organization’s role in the process.

Topics include:

  • New and Continuing Role for Patients in Research and Drug Development
  • Drug Development 101: The Basics of the Process
  • New Approaches and New Approval Pathways to Drug Development
  • Why and How Should Our Community Start A Patient Registry?
  • Why and How Should we Expand the Data in Our Registry?
  • How to Begin Research Collaborations
  • Expanding Your Reach: Strategically Growing Your Research Collaborations
  • Who’s Who at Regulatory Agencies
  • When and How to Talk to the Regulators


In Partnership with: