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.


General Session

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

Public Policy

Regulatory Science

Newborn Screening

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.

1 thought on “EveryLife Community Congress: New Agenda”

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