Heart Institute
Advocacy & Support Groups

Advocacy and Support Groups

A family with a child newly diagnosed with heart disease faces many levels of anxiety and stress. In addition, children who grow up with heart disease face significant physical and emotional challenges.

Because we're committed to family-centered care at Cincinnati Children's Heart Institute, we provide support groups tailored specifically for families of children and adults with heart disease. Families are invited to participate in these support groups in which adults, children and parents can learn from each other. Support group members are involved in annual events including a family camp weekend, a week-long summer camp for kids with heart conditions, a retreat for adults with heart conditions and a family education day for families of children and adults with heart disease.

Heart Institute Patient and Family Advisory Council

The Heart Institute Patient and Family Advisory Council (HIPFAC) is a diverse group of patients and family members who work with the Heart Institute clinicians, staff, and leadership to enhance medical care and quality of life for children living with congenital heart disease. Founded in 2009, the HIPFAC strives to improve patient experience, safety, and health outcomes by connecting the voices of staff and fostering improvements in compassionate care.

How to get involved

  • Guest Contributors are invited to attend experience meetings that are specifically targeted at sharing feedback to identify opportunities for improvement.
  • Advisors make a commitment to participate in a project that arises from feedback shared at experience meetings. This commitment involves attending working meetings and may include collaboration opportunities outside of our regularly scheduled meeting times, depending on the needs of the project.

For more information regarding the HIPFAC, or to get involved, please contact us at hi.pfac@cchmc.org

Congenital Heart Network of Greater Cincinnati

The Pediatric Congenital Heart Association’s mission is to Conquer CHD. We are founded on the key purpose to be the resounding voice of the pediatric patient population and are accomplishing this through collaboration with patients, parents, providers, and partner organizations in order to improve quality and outcomes through support, education, research, advocacy and awareness.

The Congenital Heart Network of Greater Cincinnati is a program of PCHA-OH, aimed at improving the lives of those with congenital heart disease and their families through direct support and education – meeting families where they are. Through local activities like peer-to-peer support, care package distribution and educational materials, we are working directly with patients, families and medical professionals impacting one life at a time.

Join us for Congenital Heart Network (CHN) quarterly meetings at Cincinnati Children’s. Childcare and dinner are provided for our families. For upcoming meeting details and other events please visit ConqueringCHD.org/Ohio or email pcha.oh@conqueringchd.org.

Find us on Facebook! Join our CHN Greater Cincinnati group and follow us at PCHA Ohio.

Tabitha Donner, PCHA-OH President, CHN Greater Cincinnati Lead Coordinator

Leslie Sams, PCHA-OH Secretary, CHN Greater Cincinnati Outreach Coordinator

Adult CHD Survivors of Cincinnati

Adult CHD Survivors of Cincinnati is a collaboration effort to provide Adult Congenital Heart Disease (ACHD) patients, families and friends with a support and educational program. We provide one-on-one support, community outreach/fundraising opportunities, educational opportunities, social events and advocacy for CHD families. We are based in Cincinnati and directly serve patients at Cincinnati Children's, however we provide online support through email and social media to patients outside the Cincinnati area.

The grassroots effort is lead by a small group of passionate ACHD patients dedicated to bringing a voice to the ACHD community. To provide the best support and most up-to-date education, we collaborate with several ACHD/CHD organizations including the Heart Institute's Adult Congenital Heart Disease Program, Adult Congenital Heart Association, Children's Heart Association of Cincinnati and Congenital Heart Network of Greater Cincinnati. Through these professional relationships we are able to provide support or refer support, to anyone impacted by Congenital Heart Disease.

Join us each month for the Adult CHD Survivors meetings at Cincinnati Children's and connect with us on Facebook.

To learn more about Adult CHD Survivors of Cincinnati, contact Danielle:

Danielle Fritsch, Coordinator
Phone 513-884-0601
Email: survivingchd@gmail.com

Heart Encyclopedia

Heart Encyclopedia.
Learn about pediatric heart defects and disorders in our Heart Institute Encyclopedia. Learn More