More adults living with #CHD than children in the U.S. pose a new medical frontier with unique needs. Join us to help spur innovation in research and shape care, improving patient outcomes and quality of life: Learn more:​​

While pulmonary arterial hypertension is rare, it can affect any CHD patient, especially people with left-sided heart disease, lung disease, or sleep apnea. Watch this recorded @ACHA_Heart webinar with Dr. Nicolarsen to learn about risks and prevention!

Our investigators discussed patient and family perspectives on research directions, and presented on the CHI’s work to improve the future of #CHD care at the 2024 Single Ventricle Investigator Meeting. @childrensnatl @acha_heart @curastrategies

A paper detailing the creation of the CHI’s ACHD registry was published in @JAMA_current! It highlights patients’ power to improve CHD care for future generations. Check it out: @acha_heart @ChildrensNatl

Our annual report is here! It features fresh insights on employment, insurance, and sub-studies exploring different aspects of living with CHD, including maternal health, specialized ACHD care, mental health, and more. Read here: @ACHA_Heart

Representatives of the Congenital Heart Initiative attended the @ACHA_heart 2024 Baltimore/DC Regional Conference on Saturday, September 28th. Patients, family members, and providers all came together to learn from and connect with one another!

CHI experts are exploring different facets of life with CHD. Our sub-study on maternal health aims to empower patients to shape future maternal care, with the goal of reducing pregnancy-related stress and anxiety for people with CHD. More details to come in our annual report!

We are excited to embark on a new project that aims to make the CHI more accessible to people with neurodevelopmental disabilities (NDD). We can’t wait to dive in and share insights as we go! @ACHA_Heart

The CHI will be back soon! We're working on developing a more responsive platform with real-time data based on your input, launching early 2025. More updates to come! @ACHA_Heart

If you were diagnosed with CHD as an adult, we encourage you to watch the next webinar from @ACHA_Heart. Join Dr. Yuli Kim on Sept. 11 to learn about common heart defects diagnosed later in life and what to expect after your diagnosis. #CHDaware

Researchers at the CHI are investigating various aspects of life with CHD. Studies explore such areas as maternal health, demographics affecting outcomes, mental health and more. Our upcoming annual report will provide further details — we can’t wait to share it with you!

Our spring Research Rumble pitted 20 research topics against one another in head-to-head matchups and asked ACHD community members to vote for the topics(s) they felt were most important. These results provide insight into potential directions for the CHI Registry!

The next CHI Annual Report is on its way! This year’s report includes details on registry sub-studies, conferences, and new data on areas like insurance and employment. Stay tuned for more!

Atrial septal defects (ASD) are the most common #CHD diagnosed in adults. This @ACHAHeart webinar on Wednesday will dive into diagnosis and management of different types of ASDs. Register here (a recording will be available afterward):

Dr. Anitha John of @ChildrensNatl and Dr. Roni Jacobsen of @ChildrensColo attended the Asian Pacific Heart Forum 2024 in Japan! Dr. John presented on the CHI and key findings from our community of adults living with CHD:

Our next annual report is on the way! It will include new insights on employment, insurance, and sub-studies spanning maternal health, specialized ACHD care, mental health and more. Stay tuned!

The CHI is going on summer break! With the CHI-RON study finished, we’ll keep sharing insights but are pausing the registry to analyze data and redesign. Look out for info sessions, research, surveys, and our new Annual Report. Thank you for your continued participation!

Did you miss the @ACHA_heart webinar on executive function? CHD can increase the likelihood of neurocognitive deficits — check out this webinar for strategies to decrease risk and improve executive functioning:

This year, the CHI is conducting studies on pregnancy, mental health, long-term healthcare follow-ups and more! Consider contributing your voice to better quality of life for other adults living with congenital heart disease. Join the CHI today:

Studies show people with CHD and lapsed care require more medical interventions. We're investigating gaps in CHD care to gauge what's needed moving forward. Join the CHI and contribute your own insights to help us understand needs in CHD care:

The CHI in-person meeting is underway — an important opportunity for our community to connect! We’re here discussing the future of the Congenital Heart Initiative and our ongoing projects, new research topics, & more. @scott_leezer