New England Consortium of Metabolic Programs
Annual Meeting
November 6, 2009
What is a Disease?
9:00 – 9:30am: Registration and tour of exhibits
9:30-9:40am: Introduction (Susan Waisbren, PhD, Children’s Hospital Boston)
9:40-10:15am: Brief reports
- New England Connection for PKU and Allied Disorders (Denise Queally)
- Children’s Hospital Boston Teen Challenge (Tiffany Bowlby, LCSW)
- New England Genetics Collaborative (John Moeschler, MD and Amy Schwartz, MPH)
- Medical Home project (Carl Cooley, MD and Christopher Stille, MD)
- Newborn Screening Laboratories (Inderneel Sahai, MD)
- New England Consortium Website (Freedom Baird, MS)
10:15-11:05am: Keynote Address
“On Drawing Lessons from the History of Newborn Screening for PKU” (Diane Paul, PhD Professor Emerita, University of Massachusetts Boston, Department of Political Science and Research Associate, Museum of Comparative Zoology, Harvard University)
11:05-11:15am: Break
11:15-11:45pm: Reports from State Public Health Department Representatives on Newborn Screening and Interesting Activities
11:45- 12:15pm: Health and Psychosocial Outcomes in Adults with Galactosemia (Gerard Berry, MD)
12:15-1:15pm: Group photo, lunch and tour of exhibit
1:15-1:45pm: Introduction to the Breakout Sessions “What is a disease and how do we find out?” (Wendy Smith, MD Director, Division of Genetics at Barbara Bush Children’s Hospital)
1:45-2:45 pm: Breakout sessions
- Medicine (Wendy Smith, moderator)
- Public Health (Cindy Ingham, moderator)
- Nutrition (Ann Wessel, moderator)
- Psychosocial Outcomes and Transition Issues (Marinell Newton, moderator)
2:45 – 3:15 Reports from the Breakout sessions
3:15-3:30pm: Wrap-up and evaluations