The Mended Hearts, Inc. Advocacy
The Mended Hearts, Inc.’s main policy objective is for patients and caregivers to have a powerful voice when it comes to making healthcare decisions for themselves and/or their loved ones. We support advocacy initiatives that promote patient-centered caretruly empowering patients and their families by providing them with the information they need and ensuring they play the central role in their healthcare team.
Our Advocacy Statement
To energize and engage heart patients and their families through advocacy, enabling them to make informed decisions that improve their quality of life. ©
The Mended Hearts, Inc. ACTION NETWORK
Expanding on our continuous efforts to empower patient and family voices, Mended Hearts® & Mended Little Hearts® have created The Mended Hearts, Inc. ACTION NETWORKa community of patients and caregivers dedicated to championing patients, families, and researchers. If you want to speak up for the heart patient community and become more involved in Mended Hearts & Mended Little Hearts advocacy efforts, we encourage you to join the MHI ACTION NETWORK! You will receive information on our latest advocacy work, along with action alerts for opportunities to raise your voice for the heart patient community. Join today!
Join The Mended Hearts, Inc. ACTION NETWORK
See Our Current Advocacy Priorities HERE
1.Building Evidence for Peer Support
2.Increased Patient Engagement at the FDA and CMS
3.Centralized Reporting for Pulse Ox Screenings
If youd like to contact your representatives about our current policy priorities, head to our Take Action page!
On May 4, 2022, The Mended Heart, Inc. partnered with the Adult Congenital Heart Disease Association (ACHA) to host a virtual Advocacy Day. Advocates had the opportunity to learn more about issues affecting the heart disease community and join other advocates as they urged federal lawmakers to support legislation that will provide funding for heart disease research and innovation.
During Virtual Advocacy Day 2022 we advocated for the following:
- Continued funding for heart disease and CHD
- Passage of the CAROL Act to establish new programs and inter-agency coordination to study valvular disease
- Support for legislation to address the lifelong needs of CHD patients ensuring there is an adequate workforce to meet the demands of the growing population of adult CHD survivors
- Passage of the Newborn Screening Act to help ensure standardized reporting of pulse ox screening to ensure all critical CHD patients receive timely diagnosis and treatment
Check out these amazing videos that were presented to our advocates the day of the Virtual Advocacy Day!
Rep. Barr YouTube link: https://www.youtube.com/watch?v=F7YS39Emap4
Rep. Barr shortened link: http://ow.ly/l7Xm50IUHIT
Mason McCulley YouTube link: https://www.youtube.com/watch?v=QO9Zn2x6OwM
Mason McCulley shortened link: http://ow.ly/jPGp50IUHQn
Sen. Hassan YouTube link: https://www.youtube.com/watch?v=qEf8L-ozEyI
Sen. Hassan shortened link: http://ow.ly/JbbA50IX2wg
Become an Advocate
Be an Empowered Patient
An empowered patient is not merely a recipient of medical care but an active participant in their own health journey. Empowerment in healthcare means a state where individuals possess the knowledge, skills, and confidence to make informed decisions about their health and well-being. Empowered patients engage in meaningful dialogue with healthcare professionals, take ownership of their treatment plans, and harness resources to optimize their health outcomes. By embracing their role as partners in care, empowered patients navigate the complexities of the healthcare system ultimately leading to more personalized, effective, and satisfying healthcare experiences.
Shared Decision Making Guides
- Atherosclerotic Cardiovascular Disease (ASCVD): English Guide/ Spanish Guide
- Familial Hypercholesterolemia (FH): English Guide/ Spanish Guide
- Statin and other Cholesterol-lowering Therapy: English Guide/Spanish Guide
- Statin Treatment Planning: English Guide/Spanish Guide
- Atrial Fibrillation (AFib) Treatment: English Guide/ Spanish Guide
Awareness Campaigns
