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Tuesday, June 20 • 2:00pm - 3:15pm
#249: Not Your Grandma's Patient Advocacy Group Anymore

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Component Type: Forum
Level: Intermediate
CE: ACPE 1.25 Knowledge UAN: 0286-0000-17-522-L04-P; CME 1.25; IACET 1.25; RN 1.25

This forum, subtitled The Growth of Relational, Regulatory and Research Equity in Modern Patient Advocacy Groups, will share end-to-end stories of how advocates are gaining influence with researchers, policy makers, and regulators to drive the approvals of new therapies. The panelists will tell their stories from the point of view of the advocates who have organized resources differently to increase the volume and speed of research in their disease, and to address gaps in the environment in order to speed review and approvals.   Panelists will offer practical advice on how to build a coalition of patients, researchers, and family care physicians to navigate promising new therapies through the regulatory process and ultimately to patients. 

Learning Objectives

Discuss how to work with patient advocacy groups to develop, assess, and approve new medicines.

Chair

Laura Kolaczkowski

Speaker

Panelist
Upal Basu Roy, PhD, MPH

Panelist
Melissa Hogan, Esq, JD

Panelist
K. Kimberly McCleary


Moderators
avatar for Mary Murray

Mary Murray

Associate Director, Diversity and Patient Engagement, Bristol-Myers Squibb Company
As an Associate Director for Diversity and Patient Engagement at Bristol-Myers Squibb, Mary facilitates collaborations with disease-specific and community-based organizations to bring relevant clinical trial options to patients and representative populations. Mary has co-chaired the... Read More →

Speakers
avatar for Melissa Hogan

Melissa Hogan

Founder/President, Project Alive
Melissa Hogan is the President of Project Alive, the leading research and advocacy foundation for the rare disease Hunter Syndrome (MPS II). She also serves as a Patient Representative to the FDA and on the boards of several rare disease organizations. Prior to her son’s diagnosis... Read More →
avatar for Melissa Hogan

Melissa Hogan

Founder/President, Project Alive
Melissa Hogan is the President of Project Alive, the leading research and advocacy foundation for the rare disease Hunter Syndrome (MPS II). She also serves as a Patient Representative to the FDA and on the boards of several rare disease organizations. Prior to her son’s diagnosis... Read More →
avatar for Laura Kolaczkowski

Laura Kolaczkowski

Lead Patient Representative, Co-Principal Investigator, iConquerMS PPRN, PCORnet
Laura is an advocate, patient and researcher in multiple sclerosis. She is the co-principal investigator for iConquerMS, a PCORnet Patient Powered Research Network. Experienced in patient centered research, she has been a stakeholder reviewer for PCORI and the DoD CDRMP. A member... Read More →
avatar for K. Kimberly McCleary

K. Kimberly McCleary

Managing Director, FasterCures, A Center of the Milken Institute
Kim leads the Patients Count: Science of Patient Input program through which FasterCures aims to improve health by expanding opportunities for patients’ perspectives to shape the processes by which new therapies are discovered, developed and delivered. She has been involved in FasterCures... Read More →
avatar for Upal Basu Roy

Upal Basu Roy

Director of Translational Research Program/Director of Patient FoRCe, LUNGevity Foundation
As Director of LUNGevity Foundation’s Translational Science Research Program, Upal implements LUNGevity’s research awards program. He is also the Director of Patient FoRCe – LUNGevity Foundation’s patient-focused research center. LUNGevity’s Patient-Focused Research Center... Read More →

Tuesday June 20, 2017 2:00pm - 3:15pm CDT
S402ab McCormick Place 2301 South Martin Luther King Jr. Drive, Gate 4 Chicago, IL 60616
  04: PatientEngagement, Forum