Meeting

Meeting 1: Committee on the Public Health Dimensions of the Epilepsies


When: January 10, 2011 (10:00 AM Eastern)
Where: 20 F Street NW Conference Center (Conference Room B) • 20 F Street NW, Washington, DC 20001

Topics Diseases, Public Health
Activity: The Public Health Dimensions of the Epilepsies
Board: Board on Health Sciences Policy

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Agenda

INSTITUTE OF MEDICINE
National Academy of Sciences

Committee on Public Health Dimensions of the Epilepsies

First Committee Meeting
Monday, January 10, 2011

20F Conference Center
20 F Street, NW, Room B
Washington, DC 20001


PUBLIC AGENDA


10:00 – 10:15 a.m.  Welcome and Introductions
                                    Mary Jane England, Committee Chair


10:15 – 11:15           Presentation of Committee Charge
                                    Howard K. Koh, Assistant Secretary for Health, HHS 
                    
                                    Story Landis, National Institute of Neurological Disorders and Stroke, NIH
                                        
                                    Vision 20/20:
                                    Introduction of Vision 20/20 – Frances Jensen
    

                                    Co-Morbidities
                                            Presenter: Susan Axelrod, Citizens United for Research in Epilepsy (CURE)
                                            Groups that participated in compiling this presentation: American Epilepsy 
                                            Society (AES), CURE, Epilepsy Foundation (EFA), Finding A Cure for Epilepsy 
                                            and Seizures (faces), International Dravet Syndrome Epilepsy Action (IDEA) 
                                            League, International League Against Epilepsy (ILAE), Intractable Childhood 
                                            Epilepsy (ICE) Alliance, LGS (Lennox-Gastaut Syndrome) Foundation, 
                                            Tuberous Sclerosis Alliance (TSA)

                                    Pediatrics 
                                            Presenter: Vicky Whittemore, TSA
                                            Groups that participated in compiling this presentation: CURE, EFA, 
                                            Hemispherectomy Foundation, Hope for Hypothalamic Hamartomas, 
                                            ICE Alliance, IDEA League, Rasmussen’s Encephalitis (RE) Children’s Project, 
                                            Seizure Tracker, TSA
                    
                                    Patient Advocacy/Stigma
                                            Presenter: Denise Pease, EFA
                                            Groups that participated in compiling this presentation: AES, Anita Kaufmann 
                                            Foundation, CURE, EFA, IDEA League, LGS Foundation, Seizure Tracker

                                    Healthcare Services Advocacy
                                            Presenter: Ed Bertram, ILAE 
                                            Groups that participated in compiling this presentation: AES, faces, ILAE, 
                                            National Association of Epilepsy Centers (NAEC)

                                    Therapy
                                            Presenter: Jacqueline French, faces 
                                            Groups that participated in compiling this presentation: AES, Epilepsy 
                                            Therapy Project, faces, ICE Alliance, IDEA League, NAEC, RE Children’s 
                                            Project

 
11:15 – 12:15          Committee and Sponsor Discussion of Statement of Task
                                   Facilitator: Mary Jane England, Committee Chair


12:15 – 1:00 p.m.    Working Lunch
                                   Speaker: Frances Jensen, Children’s Hospital Boston


1:00 – 3:30               Overview of Background and Context for the Study

                                    Epidemiology and Public Health Surveillance
                                            David Thurman, National Center for Chronic Disease Prevention and Health 
                                            Promotion, CDC 
                                            Dale Hesdorffer, Mailman School of Public Health, Columbia University

                                    Quality and Access to Care—The Provider Perspective
                                            Nathan Fountain, University of Virginia
                                            Christi Heck, University of Southern California

                                    The Patient and Family Perspective
                                            Patty Shafer, Beth Israel Deaconess Medical Center   
                                            Joan Austin, Indiana University School of Nursing

                                    Educating Patients, Providers, and the Public
                                            Greg Holmes, Dartmouth–Hitchcock Medical Center
                                            Joe Sirven, Mayo Clinic Arizona


3:30                           Adjourn

 

 

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