2008 Genetic Alliance Annual Conference Materials
These presentations and materials were provided by presenters for their respective sessions. If you do not see a session title in the list below, we were not provided with materials for that session.
DAYLONG WORKSHOP AND SYMPOSIUM
- Research Symposium
- From Bench to Bedside to Practice: A Practical Course—Moving Toward Treatment, Alan E. Guttmacher & Steve Groft
- So You Have the Gene, What Now? One Way to Proceed... , Leslie G. Biesecker
- Getting on Drugs: From Assay Development Through the Valley of Death, Christopher P. Austin
- Best Practices in Registries: Outcomes State-of-the-Art Approach, Jerome Wilson
- Data Collection Strategies to Fuel Bioinformatics Breakthroughs, Lisa Forman Neall
- Tuberous Sclerosis Complex (TSC) Natural History Database, Lisa Forman Neall
- Managing Information in a Registry/BioBank, Liz Horn
- Collaboration, Education, & Test Translation Program, W. Andrew Faucett
- Trial Drift: The Revolution and the Evolution of Clinical Blended Learning, Al O. Pacino II
- Portability of the Rare Diseases Clinical Research Network: Linking Patients to Studies and Investigators, Stephen C. Groft
- Innovative Approaches to Social and Behavioral Research in Rare Genetic Diseases, Barbara Biesecker
- How We Moved Off the Kitchen Table: A Rare Disease Patient Group Success Story, Dennis J. DeMarinis, Jr.
- Policy Symposium
- The Fight for Genetic Anti-Discrimination Legislation
- GINA: The Learning Experience, Joann Boughman
- Genetic Information Nondiscrimination Act 2008, Susannah Baruch
- GINA—In the making, Michelle Adams
- The Roles of Government, Industry, and Advocates in Genetic Testing Oversight
- Oversight of Genetic Testing, Gail Javitt
- Oversight of Genetic Testing: An Industry Perspective, Amy Brower
- The Need for Health Information Technology
- The Need for Health Information Technology, Janet M. Marchibroda
- The Importance of Public Access for Research
- The Importance of Public Access, Heather Joseph
- The National Institutes of Health Public Access Policy, Neil Thakur
WORKSHOPS: SESSION I
- In the Family: Exploring Issues Related to Predispositional Genetic Testing
- In the Family: Exploring Issues Related to Predispositional Testing, Joanna Rudnick and Angela Trepanier
- Community Screening and Counseling for Sickle Cell Disease
- Updating Community Screening & Counseling for Sickle Cell Disease/Traits, Robin R. Leger, Victoria Odesina, and E. Liza LeGrier
- Bringing Social Justice to Genetic Technologies
- Genetic Technologies and Social Justice, Dorothy Roberts
WORKSHOPS: SESSION II
- Newborn Screening: Joint Responsibilities
- Newborn Screening: A Joint Responsibility, J.Gerard Loeber
- Working Toward Advocacy in the Arab World, Hanaa Rifaey
- Newborn Screening Transformed Lives, Judi Tuerck
- Making the Most of Your Educational Materials
- Quality Assessment Toolbox, An ATCG-RN Product, Kate Reed & Mimi Blitzer
- Applying the ATCG Toolbox to the PXE General Bulletin, Christine M. Vocke
- The Power of Youth: Nurturing Next Generation Leaders
- Making A Prudent Investment In Our Future, Teresa Ginger Davis
- The Power of Youth: Nuturing Next Generation Leaders, Cindy Hahn
- Crossing All the T's: Translating Human Genomics Discoveries into Population Health Benefits
- Translating Human Genomics, Ralph R. Coates & Siobhan Dolan
- Public Health Genomics, Ralph R. Coates
- The Translation Continuum, Siobhan Dolan
WORKSHOPS: SESSION III
- Family History for Communities: Creating a Unique Tool
- Family Health History, James O’Leary & Vaughn Edelson
- Assuring Quality in Parent-to-Parent Support Services
- Patient Empowerment: Research and Experience
- Empowerment: The Patient Perspective, Cathy Conry-Cantilena
- Quantifying Empowerment in the Alpha-1 Community, Symma Finn
- Patient Empowerment The Alpha-1 Experience, John W. Walsh
- Patient Empowerment The Alpha-1 Experience 2, John W. Walsh
- Coverage and Reimbursement: The Ultimate Hurdles
WORKSHOPS: SESSION IV
- Family Networking and Leadership
- Hope’s Hope
- Family Networking and Leadership, Cheri McDonald, Michael Cohn, and Rachele Chrismer
- West Picture
- De-identified Samples: The Humanity of it All
- De-identified Samples: The Humanity of it All, Paul Cusenza
- Policy Approaches for Whole Genome Analysis, Laura Lyman Rodriguez
- Education and Resources for the Public About Rare and Common Genetic Disorders: A Trans-NIH Approach
- Trans-NIH Approach, Dale Halsey Lea
