Legislative Conference Agenda
Rare Disease Documentary Screening WEDNESDAY, JULY 14
THURSDAY, JULY 15
Presented by
Presented by:
1:00 P.M. – 5:00 P.M. ET
6:00 P.M – 7:30 P.M. ET
WELCOME
WELCOME RECEPTION
1:00 P.M. ET
6:00 P.M – 6:30 P.M. ET
• • • • • • • •
DOCUMENTARY SCREENING AND PANEL DISCUSSION
6:30 P.M – 7:30 P.M. ET
Welcome and 2021 Legislative Asks Welcome: Theresa Podrebarac, SVP of Clinical Development, Horizon Welcome and Moderator: Shannon von Felden, RDLA Program Director, EveryLife Foundation for Rare Diseases Jamie Sullivan, Director of Public Policy, EveryLife Foundation for Rare Diseases Dylan Simon, Newborn Screening and Diagnostics Policy Manager, EveryLife Foundation for Rare Diseases Sally Farrington Thompson, Global Health Policy Advisory, Office of Senator Roger Wicker Jay Eberle, Legislative Assistant, Office of Senator John Barrasso Caitlin Van Sant, Legislative Director, Office of Representative G. K. Butterfield
PREPARING FOR SUCCESSFUL HILL MEETINGS 2:00 P.M. ET
• •
Brenda Colmenares Moderator, EveryLife Foundation for Rare Diseases, Communications Manager
Sarah-Lloyd Stevenson, Director, Faegre Drinker Consulting Shannon von Felden, RDLA Program Director, EveryLife Foundation of Rare Diseases
DEEP POLICY DIVE #1—SPEEDING THERAPY ACCESS TODAY ACT 3:00 P.M. ET
• • • • •
GUEST PANEL
Moderator: Nicholas Manetto, Principal, Faegre Drinker Consulting Jamie Sullivan, Director of Public Policy, EveryLife Foundation for Rare Diseases Dan Whiting, Director, Community Impact, National Fragile X Foundation Paul Howard, Director of Public Policy, Amicus Therapeutics Caitlin Van Sant, Legislative Director, Office of Representative G. K. Butterfield
NETWORKING HAPPY HOUR
4:00 P.M. ET
Ben Strang
•
Director, A Mystery to Me Documentary Film Series
• • • Glenn Phillips
•
Featured in A Mystery to Me Documentary Film Series
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#RareDC2021
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Newborn Screening and Diagnostics Dylan Simon, Newborn Screening and Diagnostics Policy Manager, EveryLife Foundation for Rare Diseases Annie Kennedy, Chief of Policy and Advocacy, EveryLife Foundation for Rare Diseases State Advocacy Shannon von Felden, RDLA Program Director, EveryLife Foundation for Rare Diseases Swapna Kakani, RDLA State Advocacy Fellow, EveryLife Foundation for Rare Diseases Access State Policy Issues Jamie Sullivan, Director of Public Policy, EveryLife Foundation for Rare Diseases Rare Disease Advocacy Beyond COVID Lindsey Cundiff, Associate Director of Patient Engagement, EveryLife Foundation for Rare Diseases Abbey Hauser, Young Adult Representative of RDLA Rare Diversity: Increasing Advocacy in Underserved Communities Adrian Palau- Tejeda, Diversity Inclusion Advocacy Fellow, EveryLife Foundation for Rare Diseases #RareDC2021
