search

Blog

  1. 2019 CHD Awareness Fundraising Challenge

      Help us raise awareness and support patients and families all while earning awesome PCHA swag!! Our Goal: $50,000 Yep, it’s double our original goal! You guys are amazing! It is so easy to join the campaign Click here to create a Facebook fundraiser, then: Extend the end date to 2/28 to get in on all…

  2. Father’s Day – A Heart Dad How-To

    For Heart Dads new to CHD,  feeling a little lost, or those not sure where they fit in the CHD world, Aaron Carpenter shares what he found, after 8 years on the CHD roller coaster, worked best for him and his family. His tips just might help you too! I am the dad of two…

  3. Patient Engagement Tool – The Care Partnership Pyramid

    It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, and Janie Klug, MSN, have implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for…

  4. Making sense of congenital heart surgery data

    The Pediatric Congenital Heart Association is committed to empowering patients and families. Patients and families deserve essential information to help make important health care decisions. As this data becomes available it can be very hard to understand.  It is our hope that this resource can help.  For a .pdf version of this document, click here….

  5. Mental Health – Beyond Survival, The Struggle with Anxiety and Depression

    PCHA continues its series on Mental Health with a piece by nurse and PCHA -VA Board Member, Sydney Taylor. Here, Sydney discusses contributing factors and prevalence of Anxiety and Depression in patients and parents affected by Congenital Heart Disease.        For the first time ever, there are more adults living with a congenital…

  6. Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

    When a family learns their child will be born with a Single Ventricle CHD, they are thrust into a world of uncertainty. It is sure to be a daunting and overwhelming experience. The plan for care of these patients has not typically been clear. As outcomes have improved, providers have been able to imrove their…

  7. Becoming a fundraiser for PCHA!

    Want to help us Conquer CHD? Become an individual fundraiser to support critical programs at PCHA. It takes less than 5 minutes and is as easy as 1, 2, 3!  1. Fill out the online sign up form  (45 seconds) Enter your first and last name. Enter your mobile phone number. Enter your email. Click “Become…

  8. 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…

  9. 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…

  10. Passion and Progress: A Provider’s Perspective

    In July, PCHA is highlighting the need for transparency. Our goal is to inform, educate, and empower patients and families to actively participate in data-driven shared-decision making. Julie Slicker, a member of the PCHA Medical Advisory Board and lead on the Guided Questions Tool, speaks about the importance of transparency from a provider’s perspective.  “We didn’t know…