Annual Meeting

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.

Public Meeting
9:00 am     Registration

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
– Regulatory
– Newborn Screening
2:30 pm     Meeting Concludes

This meeting is for both current members of the Community Congress and for those who are interested in learning more about the Community Congress.  There is no cost to attend, registration is required:  
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