Congenital Heart Initiative

Home
Congenital Heart Initiative

Patients, providers and researchers passionate about improving the lives of adults living with congenital heart defects through a patient-powered registry.

23/04/2026

Please join us in congratulating Dr. Rohan D’Souza on being our this month! ⭐

As an Associate Professor in the Department of Obstetrics & Gynecology at McMaster University and a Maternal-Fetal Medicine physician at Hamilton Health Sciences, we’re especially proud of Dr. D’Souza’s contributions to our research on how to improve reproductive health outcomes for those living with .

Aside from working with the , Dr. D’Souza has also authored journal publications with the American Heart Association and is leading the maternal-cardiovascular network in Canada through his research group, Flourish Lab.🔬

Do you know someone who has made a big impact in the community? Send us a DM or tag them below, and share why you think they should be our next .

20/04/2026

Don’t miss your opportunity to contribute to a unique research project exploring the psychological impact of congenital heart disease, and how it may lead to lasting trauma or even .

🔎 Led by Dr. David Harrison, this study looks at how living with can take a toll on the body and mind, but also how it can result in great courage and resilience.

If you haven’t already, we hope you’ll share your experience by joining this study - it’s easy to participate: https://redcap.hitchcock.org/redcap/surveys/?s=ME7JTWKY4DCCKJME

07/04/2026

Help us make a difference for people with and neurodevelopmental disabilities ( ) ❤️

It can be challenging for those who have both heart defects and learning or developmental challenges to participate in research. But together, we can change that.

🎥 Hear from advocate and , Nancy Webster, on why this work matters and how your voice can help improve research for people like her sister, Martha.

If you or someone you care for is living with CHD and NDD, we invite you to join this fully online study.

Learn more at the link below that best reflects who you are:
🔹 Caregiver/family member: https://hxplatform.pressganey.com/revelation/welcome/Chnw914VFpVWV4aRnqAHieWC
🔹 Patient who needs assistance: https://hxplatform.pressganey.com/revelation/welcome/VvqRq7JtjdVNcxJBbsqPggYX
🔹 Patient who can complete the survey independently: https://www.connection.solutions.iqvia.com/icportal/login?redirect=/CHI

31/03/2026

When you join the CHI registry, you contribute valuable information that helps researchers and clinicians better understand lifelong conditions and improve care for all people with . 🤝

Participation is simple, secure, and designed with patients in mind.

➡️ If you haven’t already, be sure to create a new profile to join the new and improved platform: https://www.congenitalheartinitiative.org/

24/03/2026

We are pleased to spotlight Jennifer Cortes as this month’s ⭐

In addition to being an patient herself, Jennifer volunteers with the Adult Congenital Heart Association, including previously serving on ACHA’s patient and family advisory board, advocating on Capitol Hill, supporting , and participating in research to improve care for adults with .

Do you know someone who has made a big impact in the ACHD community? Send us a DM or tag them below, and share why you think they should be our next .

18/03/2026

We hope you can join us on Tuesday, March 31st, 7-8 PM EDT for an evening of insightful research and discussion.

This hour-long virtual session will include a patient panel and explore the latest work in related to mental health care, stroke and pregnancy.

Featuring research highlights and interviews with:
• Dr. Natalie Ullman at Children's Hospital of Philadelphia
• Dr. Rohan D'Souza from McMaster University
• Dr. David Harrison at Fairfax INOVA
• Dr. Corinne Smorra with Heart and Mind Counseling

🗓️ Register to attend today: https://us02web.zoom.us/webinar/register/WN_N4tbd8F-R9iuN4tc0JpWLQ

04/03/2026

Scott Leezer grew up with and today he’s the proud founder of Every 100th Heart and a supporting member of the Congential Heart Initiative team.

Scott’s life reflects what millions of people around the world experience: doesn’t end at childhood. It lasts a lifetime, and the needs of congenital heart disease patients must be heard, understood, and supported into adulthood.

Patients are the experts of their own lives, and together we can build a better future for everyone touched by CHD.

26/02/2026

Our work wouldn’t be possible without the people who power our progress.

Embodying this mission, we are pleased to spotlight Dr. Natalie Ullman, attending neurologist with the Division of Neurology at Children's Hospital of Philadelphia, as our first . 🌟

Through the data and experiences available with the , Dr. Ullman deepened her research on the risk of stroke and .
Do you know someone who has made a big impact in the ACHD community? Send us a DM or tag them below, and share why you think they should be our next . ❤️

20/02/2026

What if the questions you’ve always had about living with could help find answers for thousands of others?

Now, the CHI registry can give you the power to turn your experiences into action.

Every time you share an update, complete a survey, or connect with another community member, you’re helping researchers and doctors provide better care for people like Ruth.

Register now: https://www.congenitalheartinitiative.org/

10/02/2026

This , we are reminded of why our registry exists. Our mission is to use data-driven research to ensure patients spend less time at the hospital and more time where their hearts are: at home. 🏡 ❤️

📍Where is home for you? Comment below

30/12/2025

Our "New Year" of research is focused on the topics you told us matter most.

We added three new research papers to our library, and these findings provided unprecedented insights into the lives of over 4,500 adults with .

🔗 Check out these new publications in our library of studies: https://www.congenitalheartinitiative.org/published-studies

Address

Website

facebook.com

Alerts

Be the first to know and let us send you an email when Congenital Heart Initiative posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Want your practice to be the top-listed Clinic?

Country:

City: