Understanding the Evolving Perspectives of Patient Advocacy Groups and Their Role in Drug Development

The Rare Advocacy Movement partnered with Covance to gain a better understanding of the evolving perspectives of patient advocacy groups (PAG's) and the various roles PAG's see themselves serving in the drug development continuum
In order to generate data to inform public discussions and to find ways to better embed the critical pulse of the patient community throughout the drug development continuum, a survey was developed, of which the insights were presented at the WODC in April of 2019 and utilized to develop the rare360 program
Preliminary Results
presented at the World Orphan Drug Congress (WODC) in Washington D.C.,
April 2019
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Covance Inc., the drug development business of LabCorp®, is the world’s most comprehensive drug development company, dedicated to advancing healthcare and delivering Solutions Made Real®. 

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The Rare Advocacy Movement (RAM) is a novel rare disease community-based advocacy network designed to address the issues that affect the real world people of the rare disease community.  RAM is the only community-based Center of Insight and Collaboration Zone offering rare disease stakeholders authentic, comprehensive real world insights, from the source. Each RAM member has made a public vow to always act in the best interest of the rare disease community by abiding by the Code of Conduct for Membership. Those who violate the Code of Conduct for Membership risk removal from the RAM membership and access to the global network via majority vote.