Title

Clinical & Patient Education Inherited Blood Disorder Roundtable
Tuesday
December
13
This event will be the third in a series of patient roundtables in which ARM has partnered with leading patient advocacy organizations to provide opportunities for patient advocates to meet with leaders in research and industry. The goal of the event is to educate multi-sector stakeholders about the latest scientific progress and delivery challenges associated with hemophilia and other inherited blood disorders.
Washington, DC

CLICK HERE to View the Live-Streaming Webcast!

 

Program Agenda 

1:30-1:40pm | Welcome & Introductory Remarks
Kimberly Haugstad, President & CEO, Hemophilia Federation of America
Michael Werner, Executive Director, Alliance for Regenerative Medicine

1:40-2:10pm | Featured Talk: Gene Therapy 101 & Clinical Outlook    
Steven Pipe, M.D., Director, Division of Pediatric Hematology & Oncology; Pediatric Medical Director, Hemophilia & Coagulation Disorders Program, University of Michigan

2:10-3:05pm | Roundtable Discussion: State of Gene Therapy for Inherited Blood Disorders
Craig Butler, National Executive Director, Cooley's Anemia Foundation
Sudha Parasuraman, M.D., VP of Global Medical Affairs, uniQure
Didier Rouy, M.D., Ph.D., Senior Medical Officer, Hemophilia, Sangamo BioSciences
Katie Verb, Director, Policy & Government Relations, Hemophilia Federation of America

3:05-3:20pm | Break

3:20-4:15pm | Roundtable Discussion: Clinical Trial Recruitment & Interaction with the Patient Community
John Chapin, M.D., Medical Director, Clinical Research & Development - Hematology, Shire 
Jennifer Helfer, Ph.D., Patient Advocacy, bluebird bio
Daniel Leonard, Director of Global Patient Advocacy, uniQure
Steven Pipe, M.D., Director, Division of Pediatric Hematology & Oncology; Pediatric Medical Director, Hemophilia & Coagulation Disorders Program, University of Michigan
Michelle Rice, Senior Vice President, Public Policy & Stakeholder Relations, National Hemophilia Foundation

4:15-4:45pm | Featured Talk: The Patient’s Perspective
John Vieke, Patient Advocate

4:45-5:00pm | Closing Remarks: Next Steps
Val Bias, CEO, National Hemophilia Foundation
Morrie Ruffin, Managing Director, Alliance for Regenerative Medicine 

5:00-6:00pm | Networking & Cocktail Reception
 

Location
Carnegie Library at Mt. Vernon Square
801 Mt. Vernon Square NW
Washington, DC 20001

Questions?
Chelsey Hathaway
Manager, Patient Advocacy & Events
chathaway@alliancerm.org