Genetic Alliance 2008 Annual Conference:
Presentation Materials

These presentations and materials were provided by presenters for their respective session. If you do not see a session title in the list below - we were not provided with materials for that session.

DAYLONG WORKSHOP AND SYMPOSIA

• 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: Outcome's 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 Towards Advocacy int he 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
• Quality in Parent to Parent Support
• 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
• My Perspective

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