The following are advocacy initiatives that Mended Hearts and Mended Little Hearts have taken and/or supported in 2016-2017:

  • Members of Congenital Heart Public Health Consortium Policy Committee are represented on American Heart Association’s National Advocacy Coordinating Committee
  • ACE Kids Act: Working to establish the ACE Kids Act in the 115th Congress
  • Supporting the FDA User Fee Re-Authorization 2017
  • Members of the National Health Council
  • Members of the Person and Family Engagement Network
  • Participate on the WISH (Working to Improve School Health) policy committee
  • Supported and sent representatives to Pediatric Congenital Heart Association’s Legislative Conference advocating for congenital heart disease research funding (NIH and DOD) and surveillance (CDC)
  • 21st Century Cures Act: Signed on to letters, grassroots advocacy campaign
  • Supported the Medical Debt Relief Act of 2015
  • Participate in the AFib Optimal Treatment Task Force and efforts to improve anticoagulation of older patients with AFib. Supported report language in the FY 2016 Labor-HHS Appropriations bill to help Afib patients understand the need for anti-coagulation and correct misunderstandings of risks associated with falling
  • Signed on to a funding letter for the NCBDDD (National Center on Birth Defects and Developmental Disabilities)
  • Join with the American Heart Association, the American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR) and the National Association for Medical Direction of Respiratory Care (NAMDRC) to support a piece of legislation to improve cardiac rehabilitation utilization among women and minorities
  • Supported the federally-funded Rural and Community Access to Emergency Devices Program
  • Supports the Congenital Heart Futures Act Re-Authorization
  • Supported the Newborn Screening Saves Lives Re-Authorization Act
  • Signed on to legislation in support of Cardiac Rehab in Women and Minorities
  • Represented the patient voice in the Congressional Directed Medical Research Program for FY2014 and FY2015
  • Represented on the National Birth Defect Prevention Network, Parent Advisory Committee and the Advocacy Committee
  • Supported the National Coalition for Heart & Stroke Research for FY2017 funding for the CDC and the NIH

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