Dr. John and partner institutions have received $2.1m from The Patient-Centered Outcomes Research Institute to study ways to include adults w/ #CHD and neurodevelopmental disorders in Congenital Heart Initiative efforts to understand long-term outcomes. PEDSnet @lphiorg PCORnetwork ACHA Cardiac Neurodevelopmental Outcome Collaborative …ovationdistrict.childrensnational.org/2-1m-award-wil…

May is Mental Health month. The CHI is investigating key questions around support for mental wellbeing for people with #CHD . If you’re not yet enrolled in the CHI, join here: bit.ly/3CIIWa7

Individuals with congenital heart disease may experience a higher risk of pregnancy-related issues, such as mental health challenges. We are working hard to better understand the challenges that individuals with CHD face in accessing maternal and mental healthcare.

Patients, providers, and researchers are uniting to improve future quality of life for people with #ACHD . Please click here to learn more about our efforts and join them! bit.ly/3CIIWa7

Have you voted yet in the ACHD Research Rumble? Help us identify the project ideas that you consider most crucial to improving life with CHD! Vote now: allourideas.org/ACHD-CHI-study…

Our team is engaging registry participants, researchers, and #CHD care providers to answer key questions around improving mental health, health care transitions, and overall quality of life. Join us: bit.ly/3CIIWa7

Your voice powers our work — please help us plan future research by voting on the projects you consider crucial to the future of your care and life with #ACHD . It’s our goal to identify our community’s top priorities, and we need your help! Vote here: allourideas.org/ACHD-CHI-study…

Researchers say that about 85% of maternal deaths may be preventable. We are working hard to find ways to improve outcomes for pregnant individuals with congenital heart disease. This Heart Month, join us to help improve #CHD care: bit.ly/3OFnA50

February is Heart Month! Heart and dental health are connected — check out this webinar to learn all about the importance of taking care of your teeth and gums to avoid complications with congenital heart disease. ow.ly/5cbX50QAjot

As children born with CHD become adults, they face challenges achieving what might be considered common adult milestones. With your help, we are understanding priorities for improving care for #ACHD patients.
bit.ly/3OFnA50

Your voice is powerful. Share your voice and help us improve care for adults with congenital heart disease. Please join us and help researchers understand how to help people with #CHD thrive: bit.ly/3CIIWa7

Education is key to improving maternal outcomes with #CHD . Check out this @acha_heart webinar for expectant mothers with CHD: ow.ly/VVIC50Q1aLG Note: Please talk to your cardiologist about family planning & advice on your CHD and conditions.

Every 4 months, we ask questions on topics like physical activity to inform our ability to improve quality of life for folks with #ACHD . More insights from our incredible community in this year’s annual report were made possible by your involvement: bit.ly/3OFnA50

We are gathering important feedback from CHD patients about how to improve care for pregnant individuals with #ACHD . We look forward to continuing to engage with patients and put thoughts into action. #CHDaware

21% of the CHI community lives with Tetralogy of Fallot, according to the latest registry numbers. Do you know someone with this condition or another heart defect who is not involved in the registry? If so, please share this link with them: bit.ly/3CIIWa7 #CHDaware

Every 4 months, we ask participants to update us on how they are doing. Thanks to our amazing community, we are learning how to improve #CHD care. Please check out our annual report for more insights. Stay tuned for next year’s report, coming soon! bit.ly/3OFnA50

“Patient-centered research organizations, not providers or universities, have the greatest ability to lead this charge and lay the foundation for future breakthroughs,” Dr. Lewis states. If you’re not yet involved, please consider joining us: bit.ly/3CIIWa7

Dr. Harrison wants to study mental health and #ACHD using information from the #CHIregistry . We’ve come so far and can’t wait to see further important insights uncovered. Your voice can shape the future of care — if you haven’t yet, please enroll: bit.ly/3CIIWa7

This holiday season, we celebrate you. Happy holidays to you and yours — and thank you for your help building a better future for #CHD care. Working together, we can improve life for one another and future generations. #CHIregistry #CHD aware

Justin and John met at our first in-person CHI-RON meeting in 2021. If you have never met another person with your #CHD , like Justin, these kinds of bonds enrich lives. #CHD aware #CHIregistry