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Day One In-Conference Tracks (I-III)

Wednesday, October 21, 2015

Track I-Expanded Access

3:30

Summit Chair’s Welcome

Richard Moscicki, M.D.

Deputy Center Director for Science Operations, CDER, FDA

3:45

Current State of Expanded Access

Richard Klein

Patient Liaison Program Director, Office of Health and Constituent Affairs (OHCA), FDA

4:15

Ethical Issues Surrounding Expanded Access Including How Drugs are Made Available

Kevin A. Prohaska, D.O., M.P.H., Captain (USPHS), Medical Officer

Office of Good Clinical Practice, FDA

4:35

Impact of Drug Importation

Paras M. Patel, R.Ph., M.B.A., CDR

U.S. Public Health Service , CDER Drug Shortage Staff/ Office of  the Center Director, Senior Regulatory Review Officer, FDA

 

5:05

Patient Experience in Expanded Access

Ron Bartek

President and Co-Founder, Friedreich’s Ataxia Research Alliance (FARA) NORD, Board of Directors

5:25

Expanded Access in Oncology Pediatrics

Meredith Chuk

Medical Officer, Office of Hematology and Oncology Products, CDER, FDA

5:45

Close of Track I

In-Conference Tracks

I

Expanded Access

II

Facilitate Early Diagnosis and Treatment

III

Be Visible, Be Active, Be Heard

IV

Current Topics in Rare Diseases-FDA

V

Fueling Progress and Access

VI

Patient-Centered Outcomes Research

Track II-Facilitate Early Diagnosis and Treatment

3:30

Summit Chair’s Welcome

Marshall L. Summar, M.D.

Division Chief, Genetics and Metabolism, Children’s National Heatlh System, NORD Board of Directors 

3:35

Newborn Screening-Advanced Capabilities and Ethical Considerations

Tim Boyd

Associate Director of State Policy, NORD 

Mike S. Watson, Ph.D., FACMG

Executive Director, ACMG

 

4:20

Rare Cancer Treatment Challenges

Jim Palma

Executive Director, TargetCancer Foundation 

Mary Smith

Vice President, Public Development, United Therapeutics 

5:05

Optimizing Chances  of Clinical Trial Success-Patient Engagement from Start to Finish

Jeanne Hecht, MBA, PMP  

Senior Vice President, Global Head of Site and Patient Networks, Quintiles

Dan Bobear

Principal-Managing Director, The Patient Experience Project 

Pamela Gavin

Chief Operating Officer, NORD 

Bray Patrick-Lake, MFS

Director of Stakeholder Engagement, Clinical Trials Trasformation Initiative  

Tina Schlecht, PharmD, MBA

President, Center Point Clinical Services

5:45

Close of Track II

Track III-Be Visible, Be Active, Be Heard

3:30

Summit Chair’s Welcome

Bert Bruce

Vice President of Commercial Development Rare Disease, Pfizer

3:45

The Rebrand Effect: Accelerating Fundraising Through Communications

Lisa Phelps, MPH

Director of Marketing and Community Relations, NORD

Farra Trompeter

Vice President, Big Duck

Will Nolan

Director of Communications and Administration, Parent Project Muscular Dystrophy

4:30

Navigating the Social Media Landscape

Leigh Fazzina

Social Media Counselor, Sam Brown Health Communications

Berna Diehl

Senior Vice President, JPA Health Communications

Lauren Smith Dyer

Director of Communications, Melanoma Research Foundation

Key Contacts

Program Development
Sharon Langan
sharon.langan@cbinet.com
(339) 298-2115

Registration
Roberts Apse
roberts.apse@cbinet.com
(339) 298-2290

Sponsorship & Exhibit Opportunities
Alexa Moore
alexa.moore@cbinet.com
(339) 298-2107

Speaking & Poster Submissions
Curry Wilson
curry.wilson@cbinet.com
(339) 298-2105