Blog
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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…
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Becoming a fundraiser for CCHD!
Want to help us Conquer CHD? Become an individual fundraiser to support critical programs at CCHD. 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…
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Congenital Heart Network
Conquering CHD (CCHD) 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…
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CCHD 2017 Policy Update
Looking ahead to 2017, the Conquering CHD 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…
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Passion and Progress: A Provider’s Perspective
In July, CCHD 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 CCHD 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…
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Press Alert: Announcing New Partnership with Rapid SOS
· RapidSOS and the Conquering CHD partner to provide enhanced access to emergency services 240 million[1] 9-1-1 calls are made every year in the U.S.; over 70%[2] are from mobile phones, which fail to provide exact location to emergency dispatchers 40,000 infants are born in the U.S. each year with Congenital…
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Make your call for help do more! Subscribe to Rapid SOS – Haven
CCHD is excited to partner with Rapid SOS and their Haven mobile app, to help keep you and your loved ones safe. With the press of a button you can contact emergency services, share key information about location and medical history, and alert your emergency contacts. Perfect for families of children or adults with congenital heart disease. As…
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Survey: Parents and Public Reporting
Your experience matters and your input is very valuable! Read on for important information. You can access the survey here. Over the last two years, the Conquering CHD has been working hard to achieve public reporting and transparency of congenital heart disease outcomes data. Some of our activities have included our Questions to Ask Your…
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Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952)
Congenital Heart Disease Legislation In November, 2015, the Congenital Heart Futures Act Reauthorization Bill was introduced in the Senate (S.2248) and House (H.R.3952) by legislative champions: Senator Dick Durbin (D-IL) Senator Bob Casey (D-PA) Representative Gus Bilirakis (R-FL) Representative Adam Schiff (D-CA) Current Cosponsors (Updated 3/8/16) Senate Cosponsors Sessions, Jefferson “Jeff” [R-AL] – (joined Nov 16, 2015) Bennet,…
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“I am Conquering CHD” Fundraising Campaign
Looking for a way to give back to the congenital heart community? Want to do something that will make a difference for others with CHD? Join our “I am Conquering CHD” Fundraising Campaign, benefiting the Conquering CHD. August 21-23, 2015 volunteers from across the country will be celebrating CCHD’s second anniversary and joining together…
