PCHA is the resounding voice of the pediatric congenital heart community. Our voice is strengthened by the involvement of all of those who share our mission - those who share their stories, and advocate on behalf of the people in their lives affected by congenital heart disease. Each one of us has a story to tell. These stories make a great impact when told the right way to the right people. Let PCHA help you advocate to fellow patients, doctors, researchers, and lawmakers. Our advocates are the most effective resource for making changes on Capitol Hill, with government agencies, other national policy makers and even within their own hospitals. As an advocate, you will benefit from: regular communication to help you stay up to date on what is happening in the CHD policy world, access to resources to help empower you to share your story, alerts to when urgent action is needed, and personalized opportunities depending on local and regional needs.
Attend Advocacy Conference
Your voice matters! Join parents, patients, and providers like you in our nation's Capitol to educate our members of Congress about congenital heart disease! As PCHA continues to grow, so do our policy efforts. Please join us March 2-3, 2020 as we direct our messaging toward our expanded priorities. Together, we are #ConqueringCHD in Washington D.C.!
Start your advocacy journey by staying connected to be sure you receive timely updates on urgent action items and opportunities to advocate. Follow us on social media and join our email list.
How to contact your lawmakers
There are many ways to advocate. We offer tips and tricks for sending emails, connecting on social media, or even visiting your legislators local office.
Telling your story
Your story is the most important part of advocacy! While no one can write your story for you, we would like to provide you with a few tips to make your story impactful and powerful.
Congenital Heart Futures Reauthorization Act
The Federal Government is the largest funder of CHD research. PCHA advocates fought for the passage of the CHFRA, which became law in December of 2018. This legislation authorizes $50 million for CHD research and data collection through the Centers for Disease Control and Prevention (CDC).
2019-2020 Policy Priorities
As PCHA continues to grow, so do our policy efforts. Our 2019-2020 Priorities include new activities that directly coincide with our key program initiatives such as public reporting of congenital heart center outcomes.
Congenital Heart Public Health Framework
The Congenital Heart Public Health Consortium (CHPHC) has developed a framework that identifies the core components of the public health approach and how those apply to children and adults living with congenital heart defects. Key components of the framework address the progress made in recent years as well as the continued disparities in surveillance, policy, and health outcomes. The framework is intended to serve as a catalyst in raising awareness of the public health opportunities to reduce the risk and improve long‐term outcomes for those living with congenital heart defects.
30 Days of A Grieving Mother
Losing a child is a trial like no other. There is no one set way to grieve. There is no one way to carry on. In this special post, Heather Speakman, shares part of her family's journey after the loss of her daughter, Madison.Full Story>