Congressional Caucus Briefing

Rare Disease Documentary Screening

WEDNESDAY, JULY 14

6:00 P.M – 7:30 P.M. ET

WELCOME RECEPTION

6:00 P.M – 6:30 P.M. ET

DOCUMENTARY SCREENING AND PANEL DISCUSSION

6:30 P.M – 7:30 P.M. ET

Brenda Colmenares

Moderator, EveryLife Foundation for Rare Diseases, Communications Manager

GUEST PANEL

Ben Strang

Director, A Mystery to Me Documentary Film Series

Glenn Phillips

Featured in A Mystery to Me Documentary Film Series Presented by

Legislative Conference Agenda

THURSDAY, JULY 15

1:00 P.M. – 5:00 P.M. ET

WELCOME

1:00 P.M. ET

Presented by:

• • • • • • • • 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

• • 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

• • • • • 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

•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