Wednesday, November 4, 2015
The American Association for the Advancement of Science (AAAS)
1200 New York Avenue, NW Washington, DC
The Hon. Brian Baird, PhD, a former United States Representative for Washington’s 3rd Congressional District, has been a lifelong advocate for rare diseases and serves as a board member of Pulmonary Fibrosis Advocates. Dr. Baird holds a Ph.D. in Clinical Psychology and is currently the president of 4Pir2 Communication, which specializes in policy and science communication.
Dr. David Fajgenbaum, MD, MBA, MSc, is the co-founder and Executive Director of the Castleman Disease Collaborative Network (CDCN) and a Research Assistant Professor of Medicine in the Division of Hematology/Oncology at the University of Pennsylvania. Dr. Fajgenbaum was recently named a member of Forbes Magazine’s 2015 30 Under 30 list for Healthcare and awarded the 2015 RARE Champion of Hope: Science by Global Genes.
9:30 am Welcome Remarks – Dr. Emil Kakkis, President, EveryLife Foundation for Rare Diseases
9:40 am Keynote Speakers – Hon. Brian Baird, PhD & David Fajenbuam, MD, MBA, MSc
10:30 am Foundation Milestones, Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases
10:40 am Community Congress Overview, Max Bronstein, Senior Director, Advocacy & Science Policy, EveryLife Foundation for Rare Diseases
10:50 am Working Group Updates
11:45 am Networking Lunch
For Community Congress Members Only
12:30 pm Working Group Breakout Sessions:
– Public Policy
– Newborn Screening
2:30 pm Meeting Concludes