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ADVOCACY GUIDE

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You can help create a brighter future for people living with Marfan syndrome and related disorders by speaking out about your experience with these conditions and talking about the issues that are important to you. 

Ways you can get involved as an advocate:

  • Letter-Writing Campaigns/Call-in Days
  • Capitol Hill Advocacy Day
  • Local Congressional Visits
  • Action Alerts

You can become an advocate if you are living with Marfan syndrome or a related disorder or if you are a family member, caregiver, friend, or neighbor of someone living with one of these conditions.

This guide will show you how.