Know the Signs, Fight for Victory

Marfan and Related Conditions Community Invited to Participate in Hill Day

The Marfan Foundation is holding its Lobby Day on Capitol Hill on June 20. As a Marfan syndrome and related conditions advocate, you are invited to participate as we urge legislators to support responsible healthcare reform. We can make a difference as the American Health Care Act, which was approved by the House of Representatives, still needs to go through the Senate.

The patient community must rally around specific recommendations and work to inform legislators about the value and importance of advancing proposals that incorporate issues that are critical to patients and their families.

Please join us on Capitol Hill on June 19 and June 20. Below is a preliminary timeline of events. Travel and hotel reimbursement for this event are not available. If you plan to join us, please rsvp to by June 1, 2017, and provide your full name and address.

Schedule of Events:

Monday, June 19

6:00 PM – 8:00 PM

  • Participant Dinner and Advocacy Training Session
    The Monocle Restaurant
    107 D St., NEW, Washington, DC 20002
  • Legislative Issues Review
    Dane Christiansen, Health and Medicine Council of Washington
  • How to Make and Effective Congressional Visit
    Dale P. Dirks, Health and Medicine Council of Washington

Tuesday, June 20

9:30 AM – 10:00 AM

  • Meet at the Health and Medicine Councel of Washington
    507 Capitol Court, N.E., Suite 200
    Washington, D.C. 20002

10:00 AM – 10:30 AM

  • Group photo on the Steps of the Capitol

10:30 AM – 12:30 AM

  • Senate Congressional Meetings

1:00 PM – 2:00 PM

  • Lunch
    Senate Buffet, Basement, Dirksen Senate Office Building

2:00 PM – 4:00 PM

  • House Congressional Meetings

4:00 PM – 5:00 PM

  • Optional Debriefing Session
    Longworth Cafeteria, Basement, Longworth House Office Building

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The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.

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