Get the inside-track on our legislative initiatives and learn about the activities each working group is undertaking. This is your opportunity to weigh in with the Foundation to help guide our policy and advocacy goals.
We need your input to ensure the success of our initiatives! These include next steps on enhancing and expanding Newborn Screening nationwide, proposed webinars on Navigating the FDA, and finally, we’ll be discussing the final push to pass the 21st Century Cures Act into law.
8:30 am Registration Opens
9:00 am Welcome Remarks: Dr. Emil Kakkis, President, EveryLife Foundation
9:10 am Keynote Address: Dr. Phil Reilly, Partner, Third Rock Ventures
9:30 am Panel Discussion: What does the Election Mean for Rare Diseases?
Republican Perspective: Cheryl Jaeger, Principal, Williams & Jensen
Democrat Perspective: TBA
10:15 am Keynote Address: Dr. Richard Pan, California State Senate (invited)
10:30 am Networking Break
10:45 am Foundation Milestones: Julia Jenkins, Executive Director, EveryLife Foundation
11:00 am Community Congress Overview: Max Bronstein, Senior Director, Advocacy & Science Policy, EveryLife Foundation
11:15 am Working Group Updates
12:00 pm Networking Lunch
For Community Congress Members Only
12:30 pm Working Group Breakout Sessions
2:30 pm Meeting Concludes
For more information on the EveryLife Foundation’s Community Congress, visit the program’s homepage.