The ACHD Roundtable

Happy Thanksgiving from the ACHD Roundtable!

Today, we’re grateful for the incredible patients, families, caregivers, and providers who make up our community. Thank you for sharing your experiences, lending your voices, and helping us move ACHD research forward.

Meet ACHD Roundtable Member: Jennifer W.

An ACHD patient from Austin, TX, Jennifer brings her lived experience and her background in health informatics to our ACHD Roundtable. She’s passionate about patient-centered research and believes that “patients are experts on the lived CHD experience,” and that including them only strengthens the impact of our work.

What drives her commitment to the CHD community? In her own words:

“The best part of working with this community has been connecting with patients and providers across the country. The CHD community is special because it is close-knit; we all know each other on a deeper level. A lot of the work I do is for those we’ve lost, as well. Remembering that inspires me to keep going.”

Outside of advocacy, you can find her ice skating, at pilates, or walking trails with friends. We’re grateful for the insight and heart she brings to this work.

This World Heart Day, we want to celebrate the heart of the ACHD Roundtable—our incredible congenital heart disease patients. Their voices, experiences, and ideas guide every conversation and shape the research questions that truly matter. Today and every day, we thank them for sharing their stories and leading the way toward better care and brighter futures.

What affects lifelong care for people with CHD?

Members of the ACHD Roundtable are exploring big questions about what really impacts access to lifelong, specialized congenital heart care. That includes everything from insurance and mental health to life changes like starting college or moving across the country.

We may not have one clear answer, but we’re beginning to explore this topic so we can build thoughtful, meaningful research questions around it

Which of these do you think has the biggest impact on staying in lifelong CHD care?
(Pick one below!)

Insurance & cost

Access to specialists

Life transitions (college, jobs, moving)

Mental health & burnout