Congenital Heart Network

The Pediatric Congenital Heart Association (PCHA) is thrilled to announce the creation of our newest program: the Congenital Heart Network.

As we continue to build upon our mission to Conquer Congenital Heart Disease, we recognize the importance of meeting the needs of patients with congenital heart disease (CHD) and their families every step of the way along their journey. Expanding our programming from national activities to local ones is a critical next step. The Congenital Heart Network aims to bring patients with CHD and their families together to provide hope and support to every member of this ever-growing community across the country.

One of the Pediatric Congenital Heart Association’s strategic goals is to develop the foundation for a single congenital heart disease organization to meet the comprehensive needs of those impacted by CHD.

The Congenital Heart Network is the first step toward accomplishing this goal.  The Network will meet the many needs of the CHD community through a single, larger organization.  This program provides new collaborations, significant strength in numbers, and an infrastructure that enhances our ability to improve the lives of those living with CHD.

In addition to virtual, peer-to-peer support communities, the Network will consist of state-based chapters empowered to execute local programming providing education and support directly to CHD patients and their families.

We have been working with a team of committed volunteers with extensive experience in running and managing a national peer support network and look forward to a staged roll-out of this new important program.  As the program continues to grow, I encourage you to communicate with your local support programs to assess whether participation in the Congenital Heart Network would be advantageous to them as we offer some of the following benefits:

  • Provision of tax-exempt status under a group 501(c)(3) exemption;
  • Support in incorporation and annual filing requirements
  • Web page dedicated to information about the Network and contacts;
  • Employment of staff dedicated to the Congenital Heart Network;
  • Educational webinars to assist with management of groups;
  • Access to congenital heart related educational materials to disseminate to local network participants.
  • Additional program materials such as care package essentials

 

We are very excited about this tremendous opportunity to grow the voice of congenital heart disease while better meeting the needs of individuals with CHD and their families.  Together, we are Conquering CHD!!!!

Stay tuned for more information about how individuals can join the Network as we build our peer-to-peer structure.

Interested in learning more about forming a Chapter in your state?

Please contact: Amy Basken – Director of Programs: abasken@conqueringchd.org

or

Melanie Toth – Director:  mtoth@conqueringchd.org;

Megan Setzer – Director: msetzer@conqueringchd.org