Loading Events

« All Events

  • This event has passed.

Sharing Patient Voices Throughout the Drug Research and Development Process

May 19, 2017 @ 7:00 am - 4:30 pm


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, caregivers and all rare disease stakeholders 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.


May 19, 2017
7:00 am - 4:30 pm


Sheraton University City Hotel
3549 Chestnut Street
Philadelphia, PA 19103 United States
+ Google Map