Annual Conference 2009 Agenda | Genetic Alliance

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Annual Conference 2009 Agenda

Annual Conference 2009 Agenda

Archived Material: For Historical Purposes Only

Agenda

KEY:

Policy

Policy

Community

Community

Openness

Openness

Research

Research

Technology

Technology

Conference-Related Events

Thursday, July 16, 2009

8:00 AM - 5:00 PM	Genetics Day on the Hill
6:30 PM - 9:00 PM	Gene Screen: A Night of Film on Health and Genetics

Conference Events

Friday, July 17, 2009

7:00 AM - 6:00 PM	Registration
8:00 AM - 9:00 AM	Welcome Breakfast and Conference Highlights
9:00 AM - 6:00 PM	DAYLONG SYMPOSIA Leadership — Inside Transformation: The Anatomy of Being a Change-Maker Organizational Development — Strategies for Sustainability and Success Research — GRANDRx: Crafting a Plan for Rare Disease Drug Development Services — Novel Methods of Service Delivery
6:00 PM - 7:00 PM	Cocktail Reception & Exhibits Open
7:00 PM - 10:00 PM	State of Alliance Dinner
10:00 PM - 12:00 midnight	After Hours Social

Saturday, July 18, 2009

7:00 AM - 6:00 PM	Registration
7:15 AM - 8:00 AM	Morning Walk
8:00 AM - 9:00 AM	Networking Breakfast
9:00 AM - 10:30 AM	WORKSHOPS: Session I Building a Sustainable Future for Access to Treatment: Policy and System Implications Integrating Consumer Perspectives into Newborn Screening Openness in Practice Open Access: What It Means for Research Incorporating Family Health History into Practice
10:30 AM - 11:00 AM	Morning Coffee Break
11:00 AM - 12:30 PM	WORKSHOPS: Session II Slicing and Dicing Comparative Effectiveness CGEN Project: Culturally Sensitive Interventions to Improve Genetic Literacy Practicing Openness in Health Issues: the Alpha-1 Newborn Screening Experience De-identification of Genomics Data: Does It Exist? Technologies that Assist Informed Decision-Making
12:30 PM - 1:30 PM	Lunch
1:30 PM - 3:00 PM	WORKSHOPS: Session III Health IT Enabled Amplification of Genetic Test Results Responsible Genetics Research with Cultural and Linguistic Minority Groups Concepts of Personal and Collective Identity: Patterns of Pain or Cycles of Gain Accelerating Genomic Translation Through Partnerships, Collaborative Activities, and Health Information Technology Family Health History from the Ground Up — Web 2.0 and Community Outreach
3:00 PM - 3:30 PM	Afternoon Coffee Break
3:30 PM - 5:00 PM	WORKSHOPS: Session IV Diagnosing Disability Through Genetic Testing: A Social Justice Perspective An Eye for Design: How to Catch and Keep Your Audience Open Dialogues on Issues in Genetics and Genomics: Ethical, Theological, and Political Systems Data Collection and Specimen Storage: How Do We Talk About Blood Spots? Noninvasive Prenatal Diagnostics: The Birth of a New Technology
6:00 PM - 7:00 PM	Cocktail Reception
7:00 PM - 10:00 PM	Awards Dinner
10:00 PM - 12:00 midnight	After-Hours Social

Sunday, July 19^th 2009

7:15 AM - 8:00 AM	Morning Service
7:15 AM - 8:00 AM	Morning Walk
8:00 AM - 9:00 AM	Networking Breakfast
9:00 AM - 10:30 AM	PANEL: Harmonizing Privacy and Access in Healthcare
10:30 AM - 11:00 AM	Coffee Break
11:00 AM - 1:00 PM	PANEL: Creating Open Systems for Drug Development
1:00 PM - 1:30 PM	Wrap-Up and Next Steps

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