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Home , Bill Flores, Gene Green, Greg Walden, Jeb Hensarling, Jodey Arrington, Joe Barton

Gain Momentum: Public Policy is as Easy as a Phone Call

EveryLife Foundation for Rare Diseases

Lisa Schill Erin Garcia Event Development Consultant Special Events Manager Your Right to Lobby Constitutional Right to Lobby The First Amendment How to Navigate Congress Your Roadmap to Congress You Don’t have to be an Expert… but Know Enough to be Effective

• Understand the legislative process – How does a bill become a law? • Understand the difference between state & federal legislatures • Understand the difference between the House & Senate – 435 Members in the House of Representatives – 100 Members in the Senate • Know your Committees of jurisdiction & key Members – Committee & Subcommittee Chairs & Ranking Members – House & Senate Leadership • Don’t Be Partisan – Rare Diseases is a bipartisan issue! Role of Political Parties

• Leadership in Congress is based on how many seats your political party controls • Majority Party: Political party that controls the most seats in the House or Senate • Minority Party: Political party that does not control the majority of seats in the House or Senate • The majority party elects the senior leaders of both the House and Senate GOP Controls All Three Chambers

8 House Leadership Senate Leadership

• Senate was designed to be more moderate, deliberative and slow • It’s the “cooling off” period for Legislation – Some bills get so cold they die Congressional Committees that Impact Health & Drug Development One of the most power committees in Congress • House Energy & Commerce Committee (E&C) – ( - 02) - Chairman – ( - 06) - Vice Chairman – ( - 06) Ranking Member • Subcommittee on Health – Michael Burgess (Texas - 26) - Chairman – (Kentucky - 02) - Vice Chairman – (Texas - 29) - Ranking Member

11 Senate HELP Committee • Senate Health Education Labor & Pensions Committee

• Subcommittee on Children and Families – Chairman Rand Paul (KY) – Ranking Robert P. Casey, Jr (PA) • Subcommittee on Primary Health and Retirement Security – Chairman Michael Enzi (R-WY) – Ranking Member Bernard Sanders (I-VT) 12 Who to Engage

• Your hometown Member – Issue staff – www.house.gov – www.senate.gov • Relevant Committee Members – Subcommittee staff • Leadership • Government Agencies • State & Local Representatives

– Tip: Staff are an amazing resource, and in-district meetings are often easier to schedule and more beneficial When to Engage • ANYTIME & All The Time!! • Schedule in-district meetings during district work periods. • Pay attention to a bill’s progress through the House/Senate and schedule meetings around key events in this cycle. • Don’t wait until it is too late. Be vocal early about the issue you care about. How to Engage

• In-person meetings – DC – In District • Letters • Articles/Op-Eds • Town Halls • Phone Calls • • Make it personal Why Relationships Matter Call to Action – Action Alert Leave a Message for your MOC’s One Number – 3 Contacts! • Dial 1-844-872-0234 and wait for the automated voice machine • Press 1 and enter your zip code XXXXX. This will connect you to your first Senator • Sample script Senate ASK: – OPEN ACT – Press * if you wish to skip an office • Sample script House ASK: – OPEN ACT or RARE Act of 2018 Speed Dial &

Senator Main: (202)224-2934 @JohnCornyn

Senator Main: (202) 224-5922 @sentedcruz • Texas Representatives Speed Dial & Twitter • Rep. Jr. 202-225-3035@replouiegohmert • Rep. 202-225-6565@JudgeTedPoe • Rep. 202-225-4201@SamsPressShop • Rep. John Ratcliffe 202-225-6673@RepRatcliffe • Rep. 202-225-3484 @RepHensarling • Rep. Joe Barton 202-225-2002 @RepJoeBarton *Vice Chairman of E&C • Rep. 202-225-2571@CongCulberson • Rep. 202-225-4901@RepKevinBrady • Rep. 202-225-7508@RepAlGreen • Rep. Michael McCaul 202-225-2401@RepMcCaul • Rep. Michael Conaway 202-225-3605 @ConawayTX11 • Rep. 202-225-5071@RepKayGranger • Rep. 202-225-3706 @MacTXPress • Rep. 202-225-2831@TXRandy14 Texas Representatives Speed Dial & Twitter • Rep. Vicente Gonzalez 202-225-2531 @RepGonzalez • Rep. Beto O’Rourke 202-225-4831 @RepBetoORourke • Rep. 202-225-6105 @RepBillFlores • Rep. 202-225-3816 @JacksonLeeTX18 • Rep. 202-225-4005 @RepArrington • Rep. Joaquin Castro 202-225-3236 @JoaquinCastrotx • Rep. 202-225-4236 @LamarSmithTX21 • Rep. 202-225-5951 @RepPeteOlson • Rep. 202-225-4511 @HurdOnTheHill • Rep. 202-225-6605 @RepKenMarchant • Rep. Roger Williams 202-225-9896 @RepRWilliams Texas Representatives Speed Dial & Twitter • Rep. Michael Burgess 202-225-7772 @michaelcburgess *Chairman Subcommittee on Health • The 27th district is currently vacant • Rep. 202-225-1640 @RepCuellar • Rep. Gene Green 202-225-1688 @RepGeneGreen *Ranking Member Subcommittee on Health • Rep. Eddie Johnson 202-225-8885 @RepEBJ • Rep. John Carter 202-225-3864 @JudgeCarter • Rep. 202-225-2231 @PeteSessions • Rep. 202-225-9897 @RepVeasey • Rep. Filemon Vela 202-225-9901 @RepFilemonVela • Rep. Llyod Doggett 202-225-4865 @RepLloydDoggett • Rep. 202-225-1555 @RepBrianBabin Want To Join the Action on Capitol Hill?

• RDLA’s Advocacy Tools • In-District Lobby Days • Rare Disease Week on Capitol Hill 2019 Free Advocacy Tools You Need to Succeed in Advancing Legislation • See how YOUR legislators voted in our Rare Disease Congressional Scorecard • Action Alerts to support your legislation: – Call or email Members of Congress or slate legislators for urgent action – Promote a sign-on letter for patient organizations to support or oppose legislation – Circulate petitions to build support for policy

24 Stay Informed on Key Policy Issues

• Monthly interactive webinars highlight urgent state & federal legislation • RareAdvocates.org serves as a legislative clearinghouse • Monthly e-blast shares latest policy news, action alerts & events • Online Calendar lists policy events and legislative deadlines • Facebook & Twitter accounts feature breaking

news & action alerts 25 From July 31st through September 4th, rare disease advocates from across the country will meet with Members of Congress in their local offices to advocate for legislation benefiting the rare disease community.

Registration for In-District Lobby Days is open until July 6th. Like all of our programs, it is free for patients, caregivers and other rare advocates.

26 Goals of In-District Lobby Days

• Strengthen your relationships with Members of Congress and staff • Advance legislation that would benefit the rare disease community

A best-practice of effective advocacy is to make your friends before you need them! We NEED to gain allies in both parties who will champion rare disease causes. How In-District Lobby Days Work

• You specify the dates that you are not available within the timeframe (July 31st – September 4th). • You also specify how far you are able to travel for meetings with your Representative and Senators. • We retained Advocacy Associates to schedule the meetings and coordinate with each advocate. • They will do their best to accommodate as many constituents as possible when scheduling each meeting with Congressional offices. • Please DO NOT schedule your own meetings, we will take care of that for you!!! Preparing for In-District Lobby Days • Everyone who registers for In-District Lobby Days will be invited to a webinar on July 26th at 2pm ET/11am PT. • The webinar will provide detailed information including tips on how to make your meetings successful and what to research prior to your meetings. • Questions will be welcome during the webinar! Don’t be shy. • If you can’t join us, you’ll be able to access the archived webinar within a day at http://rareadvocates.org/in- district-lobby-days/ Rare Disease Week on Capitol Hill

2018 was our seventh and most successful year!

600+ patients, caregivers, researchers and other advocates joined us for at least one event during the week! 30 Rare Disease Week on Capitol Hill 2019 When: February 24th through February 28th Who: Rare disease patients, caregivers and other advocates including physicians What: Series of events aimed at empowering patients Where: Washington, D.C. Cost: FREE for advocates to attend

31 Rare Disease Week on Capitol Hill Why should YOU attend? • Learn about key legislative initiatives with the potential to benefit rare disease patients. • Educate legislators on the unmet needs of the rare disease community and build (or strengthen) your relationship with them. • Raise awareness of your specific rare disease and rare diseases in general. • Network with other rare disease advocates, Members of Congress and staff, leaders at FDA and NIH, and representatives of biopharmaceutical companies. 32 Financial Assistance Available through Rare Giving

The Foundation provided nearly $75,000 in travel stipends this year to enable over 90 patients and caregivers to attend who wouldn’t have been otherwise able to do so. • Advocates in Alaska, Hawaii and Puerto Rico received $1,000. • Advocates in Maryland and Virginia received $400. • Advocates in the rest of the continental US received $800. Applications for travel stipends for Rare Disease Week on Capitol Hill 2019 will open in September.

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