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Sharing Patient Voices Throughout the Drug Research and Development Process

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 2nd 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.  This year’s program will focus on rare disease research, drug development, and the patient advocacy organization’s role in the process.

Topics include:

  • The Drug Research and Development Roadmap:  How Patients Share Their Voices.
  • What Should Patients Expect when Funding Basic Research for Rare Disease.
  • Developing Strong Partnerships Between Patient Groups and Industry.
  • No Longer Just the Research Subject:  New Roles for Patients in Clinical Trials
  • Raising Funds to Support Rare Disease Research at All Stages:  Bike Rides, Bake Sales, Research Grants, and More


In Partnership with: