PCHA 2017 Policy Update

 

Looking ahead to 2017, the Pediatric Congenital Heart Association has spent the last several months developing strategic policy goals that address the needs of the congenital heart disease community, including research, data collection and public health policy.  In the next weeks, along with finalizing these goals, we will be meeting with organizational partners, our legislative champions and advocates, like you, to establish next steps to address these key policy issues in the coming year.

 

 

Our stories matter.  What you can do now:

1) Begin to build relationships: Identify who represents you and learn about them.  Listen to what is important to them.

2) Open the lines of communication – Collect your lawmakers’ email addresses, phone number and contact information for the district office near you.  For newly elected officials, this may not be available until January; however, many have social media contacts via FB and twitter.

3) Share your story.  Introduce them to your world of chronic illness.  Let them know that health issues matter to you.

Completing these steps will lay the ground work for effective advocacy in the months ahead.

We, also, urge you to consider attending the Congenital Heart Legislative Conference in Washington D.C. on March 1-2.  Here you will:

  • Learn about current CHD activities in Washington D.C.
  • Learn how to effectively tell your story.
  • Connect with other CHD patients and professionals.
  • Share your story with your members of Congress.
  • Inform your legislators about the key policy issues including the need for research and data collection.
  • Make a difference on behalf of those living with CHD!

As always, we are inspired by the strength of the millions of people impacted by congenital heart disease.  By coming together, we are conquering CHD!

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

Your story matters.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to helping people with congenital heart defect in their lives. With this partnership, we’ll be able to help even more people.

Here’s an example of the great stories you will find on The Mighty: https://themighty.com/2016/07/congenital-heart-defect-man-makes-promise-to-be-an-advocate/

We encourage you to submit a story to The Mighty and make your voice heard!