Conquering CHD - Pennsylvania

We exist to conquer the most common birth defect. We engage, listen, learn, and act. We create visibility and empower all impacted by CHD. We accomplish this through awareness, knowledge, community, and research.
Locally activities include:
-Conquering CHD Kits offering critical information and a personal connection for patients with CHD of all ages through individualized care packages
-Online chat networks bringing people with similar experiences together
-In-person peer support offering patients and families encouragement and insight from someone who has walked a similar path
-Social events providing a safe environment to celebrate life and simple joys together
-Physician education improving understanding of congenital heart disease from the patient and family perspective
-Research promotion and participation helping promising developments become reality.
-Advocacy activities sharing our stories to improve federal research funding
Patient & Family Access to Data and Decision-Making Information
Learning you or your child has congenital heart disease can be devastating. This new diagnosis comes with a lifetime of life-or-death choices. A key belief in our work is that patients and families should have access to hospital data and other information needed to make informed healthcare decisions. To facilitate this, we created several resources and provide free access to the CHD community on our website.

Hospital Navigator is a website for patients with congenital heart disease and their families, to learn about surgical outcomes and program availability at hospitals across the United States. It uses existing data and provides a framework for patients and families to have educated conversations with their care teams. www.conqueringchd.org/learn/hospital-navigator

Available in English and Spanish for families, teen patients, and adult patients, our Guided Questions Tools provide a starting point for conversations with the care team. The suggested topics are sorted by common conversations across the patient’s lifespan: learning about care team/care center, information about upcoming procedures or hospital stays, discussing treatment options, looking ahead/preparing for the future. www.conqueringchd.org/learn/guided-questions

Held annually, we host a Summit on Transparency and Public Reporting in Pediatric and Congenital Heart Disease. This forum provides a place for patients, families, providers, healthcare administrators, insurance payors, and news media to discuss the latest trends in CHD transparency and reporting. It is also the only forum in which patients and families can participate in these discussions, thus moving the landscape forward on their behalf.