Patient & Family Resources
Support Groups and Resources
Having a network of support as you navigate the diagnosis and treatment of congenital heart disease can be so helpful and important in not just living, but thriving, and staying positive. Here are several resources and support groups available to patients and families of the UF Health Congenital Heart Center.
American Heart Association’s American Heart Heroes is a FREE program for Florida kids with heart defects. This unique program offers opportunities for members to enjoy activities designed to build friendships, support and spirit. It’s a place where these children and their families come together, along with resources provided by the American Heart Association, to navigate the challenges and celebrate the successes of living with congenital heart defects.
Broken Hearts of Florida is founded on the premise that “a good exercise for the heart is to bend down and help another up,” Joining Broken Hearts of Florida gives you a wide network of support from other families who know what it’s like to live every day with congenital heart disease. There are no membership fees and no requirements except to be kind and compassionate to fellow heart families.
Camp Boggy Creek is a year round camp serving seriously ill children throughout Florida. CBC offers week-long summer sessions including one for children with heart disease, and family retreat weekends for the whole family. There is no charge to come to camp.
The Ronald McDonald Houseis a “home-away-from-home” for families of seriously ill children receiving treatment at local hospitals in North Central Florida. Open 24 hours a day, seven days a week, including holidays, it’s an answer to a prayer for families who cannot leave the hospital because of the condition of their child.
The Children’s Miracle Network‘s mission is to build awareness and raise funds for hospitalized children. The organization’s purpose is to help advance health care for children in our local communities. UF Health Shands Children’s Hospital, like all Children’s Miracle Network Hospitals, is there 24 hours a day to help all kids overcome all types of disease and injury.
Mended Little Hearts, a support program for parents of children with heart defects and heart disease, is dedicated to inspiring hope in those who care for the littlest heart patients of all. Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope.