Resources, Amenities and Support Groups for ACHD Patients
We encourage you and your loved ones to take advantage of the following patient resources specific to adults living with congenital heart disease (CHD).
Developing Community
When you are faced with a lifelong heart condition such as adult congenital heart disease, it can help to connect with others who understand what you’re going through. Support groups offer a way to bring people together to share information, to help reduce stress and anxiety, and to provide education.
Support groups that may be of interest to adults with congenital heart disease include:
- Congenital Heart Alliance of Cincinnati
This alliance is made up of volunteers affected by CHD whose support goes toward funding groundbreaking research, global collaboration and holistic well-being initiatives. - Adult CHD Survivors of Cincinnati
This group’s aim is to bring a voice to the ACHD community. They work with several local ACHD/CHD organizations to offer support to those in Greater Cincinnati and beyond. - Adults with Congenital Heart Defects
This is a private Facebook group for teens and adults with heart disease.
Learn more about these groups and the CHD community, including contact information and Facebook groups.
Other Organizations
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Adult Congenital Heart Association
The Adult Congenital Heart Association offers information to improve and extend the lives of those born with heart defects. - Conquering CHD
The network’s mission is to conquer CHD. Their goal is to provide support and education to help improve the lives of those who have congenital heart disease and their families. - Fontan Outcomes Network
This lifespan learning network includes patients, families, clinicians and researchers who want to transform outcomes for people affected by single ventricle heart disease. - Congenital Heart Initiative
This is a collaborative of patients, providers and researchers who share information to improve the lives of adults with congenital heart defects.
Cincinnati Children’s Patient Resources
- The Family Resource Center offers a place for families to relax and get assistance with many non-clinical amenities.
- Guest Services at Cincinnati Children’s helps make a stay in Cincinnati more comfortable and convenient. We provide assistance with lodging, ground transportation and other concerns.
- Our scheduling coordinators schedule multiple medical appointments for families traveling to Cincinnati Children’s from outside the region.
