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Legislative Action Alert: Urge Responsible Healthcare Reform

The 115th Congress and the incoming administration have made it a priority to “repeal and replace” the Patient Protection and Affordable Care Act (ACA). The legislative process will be protracted, include input from multiple stakeholders, and cover far reaching parts of the healthcare system. At this uncertain time, it is important to avoid being caught up in partisan politics and the sheer scope of the overall debate. In order to ensure this process leads to meaningful patient-centered outcomes, the patient care community must rally around specific recommendations and work to sensitize legislators to the value and importance of advancing proposals that incorporate these items.

As a Marfan syndrome and related disorders advocate, we are requesting your assistance in communicating to Members of Congress on the important issue of responsible healthcare reform. Please read below and call or email your representatives today. Please feel free to pass this on to others who will take action. Thank you.

Action Alert

Please contact your two Senators and your House Representative to ask them to support critical patient protections during the current healthcare reform effort 


Congress is currently debating significant changes to the healthcare system, including modifications that will impact private insurance expenses and accessibility. This debate has the potential to create many negative outcomes for individuals and families affected by chronic or costly medical conditions. If federal patient protections are ultimately removed or weakened, then many patients could be exposed to increased costs, medical bankruptcy, and lack of access to needed care or therapies.

Members of Congress need to understand that their constituents expect them to maintain and strengthen patient protections in the healthcare system. The best way to educate your two Senators and your House Representative about your needs and earn their support for patient protections is to connect with their offices and make your voice heard.

Take Action

  • Secure the contact information for your two Senators and one Representative by visiting and and using the “Find Your Senator/Representative” query tool in the upper right corner.
  • Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template on the next page.
  • Politely and occasionally follow up on the request. You should have an expectation that the office will respond to your specific concerns.
  • If you would like to do more, you can request a brief meeting with the staff at your members’ local offices (the location information is on their websites).


Dear _______,

My name is _________ and I am a constituent from _________. I am also an advocate for the community of individuals impacted by Marfan syndrome and related disorders. Marfan syndrome and related disorders are life-threatening conditions which cause an enlargement of the aorta which is then predisposed to dissection and rupture.

As you and your colleagues consider healthcare reforms, please do not repeal the ACA without a well-crafted replacement prepared and discussed with stakeholders. Further, make sure any proposal maintains crucial patient protections that promote access and prevent financial hardships. Specifically, please continue to:

  • prohibiting pre-existing condition discrimination
  • restrict lifetime and annual caps on benefits
  • allow young adults to stay on family coverage until they are 26
  • limit out-of-pocket costs for patients

[Add a paragraph of brief information about the medical condition you are concerned about. Tell your story.]

Thank you for your time and your consideration of this letter. Please tell me how you have responded to my request.


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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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