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  1. Take Action: Share your #CHDVoice with your Legislators

    As you read this, more than 150 fellow advocates are on Capitol Hill meeting with their Members of Congress as part of the PCHA’s 2020 Advocacy Conference.  They are asking their lawmakers to fully fund $10M for CHD research and data collection at the CDC, help patients and families get the info they deserve and…

  2. Hospital Rankings – A Letter to U.S. News and World Report

    In response to conversations at our 2019 Summit on Transparency and Public Reporting last fall, CCHD submitted a letter to US News Editorial Staff, expressing the concerns of the patients and families we serve regarding the challenges of ranking hospitals. We are pleased that we were able to have a constructive follow-up conversation with them…

  3. Check Out the New ACHD Info Kits

    Check Out the New ACHD Info Kits

    As we continue our commitment to the lifespan of patients and families affected by CHD, CCHD has launched our New ACHD Info Kit!! This kit, created especially for Teen and Adult Patients, includes several new resources designed to help patients transitioning to adult care as well as adults already there, into a handy padfolio. Check…

  4. News Alert: 3D Printing a Human Heart Valve

    Originally posted on October 10th, 2019 by Dr. Francis Collins on NIH Directors Blog “While there’s a long way to go until then, a team of researchers has reached an important milestone in bioprinting collagen and other extracellular matrix proteins that undergird every tissue and organ in the body. The researchers have become so adept at it that…

  5. Edward Bauman Celebrates One Year Post-Op

    One year after surgery, Adult CHD patient, Edward Bauman, decided to mark the occasion by creating a video that shares his experience preparing for and immediately following his procedure. Watch to hear about his journey and his tips and tricks that may help on yours! For more from Edward and his follow up video at…

  6. The Unexpected Defibrillator

    Growing up with CHD and constantly facing your own mortality is a very scary reality. For many warriors, anxiety can arise from the myriad of worries. Today we’ll hear from Danielle Sikorski, a heart warrior who shares her personal experience and how she tries to mitigate some of the stresses her daily life. Please note that…

  7. March Recap – Taboo Topics

    Hi CCHD-ers! Here’s a little recap on our “taboo” series this past month.  Taking Back Some Control CHD and the Taboo Q&A: Your Questions Answered “Taboo” ACHD Activities Teen Topics – The Top 10 Things to Remember

  8. CCHD: At the Heart with Jess

    CCHD was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how CCHD has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with Jessica Chenevert, our Marketing Coordinator.    …

  9. The Gifts that Life Brings

    Hello CCHD! I hope everyone is enjoying the holiday season. In the spirit of giving, here are a few short anecdotes on the most memorable gifts that life has brought us. Happy Holidays!!!  The best Christmas present I received in recent years was family abandoning our usual Christmas traditions and coming to visit me after…

  10. November Recap – Grateful Hearts

    Throughout the month of November, we took a look at everything we have to be grateful for, through the hard times and the good. And we discovered that we have so much to be grateful for in this crazy thing called life!  I just want to make a quick note to the CCHD community, next…