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Mended Little Hearts Advocacy

Join our Patient Advocacy Network to receive email updates, training opportunities, and calls to action.

Mended Hearts and Mended Little Hearts Advocacy Priorities

1. Access to innovative cardiovascular disease treatments and devices. Read the official issue brief here.

2. Medication adherence and medication therapy management

3. Promote, ensure access to and expand the use of cardiac rehabilitation

4. Reducing health disparities in congenital heart disease

5. Encouraging innovation in pediatric devices for treatment of congenital heart disease For a full explanation of the Mended Hearts/Mended Little Hearts advocacy priorities please click here

Save the Date!

May 7-9, 2017

The Liaison Hotel

Washington, DC

LEARN! Learn about topics that impact the health of heart patients and how you can be the voice of change.

NETWORK! Network with 100 patient advocates from across the nation and learn how they are using thier voice.

VISIT! Visit with your legislators and representative from your state to share your story and be the voice of change.

Trained Mended Hearts and Mended Little Hearts Advocates from across the country will be invited to attend.

This event is by invitation only! To be eligible to attend, the advoacte must have attended the advocate training in person or online.

For more information on how you can attend, email andrea.baer@mendedhearts.org or visit www.mendedhearts.org/advocacy.

Mended Hearts gratefully acknowledges the support of Amgen, AstraZenca, Edwards Lifesciences Foundation, Novartis, and Sanofi Regeneron

Becoming A Patient Advocate – Tell Your Story Effectively and With Ease

Are you interested in sharing your story about heart disease to create greater awareness in your local community or on a national level? The Mended Little Hearts Patient Advocacy Training Videos are a perfect tool to help you share your story effectively and with inspiration. The video series shares the steps needed to speak to the media and to lawmakers. The step-by-step guide will give you the skills and confidence to share your story in a way that can make a difference in heart disease care and research.

Introduction to Patient Advocacy

How to Meet with Your Lawmaker

How to Tell Your Story to the Media

 

The following are advocacy initiatives that Mended Hearts and Mended Little Hearts have taken and/or supported in 2015 - 2016:

  • Members of Congenital Heart Public Health Consortium Policy Committee
  • Are represented on American Heart Association’s National Advocacy Coordinating Committee
  • 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)
  • Signed on to 21st Century Cures letter
  • 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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"Thanks again. This support group is very inspiring and I am not sure how I would be coping if it weren't for the people, support, and information Mended Little Hearts provides."
- Amanda Stewart, Mom to Cuyler
Pittsburg, Pennsylvania
Inspire Online Community

 

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