Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.

Your Donation in Action

2011: ACHA has been hard at work and has a number of successes to show for it.

Our newly designed website launched in March. The webpages are organized more efficiently and easier to navigate for patients, family members, and providers to find important information about congenital heart disease (CHD) and related care.

We hosted our Sixth National Conference in Los Angeles from April 28 to May 1. This conference has been the most successful for ACHA to date, with nearly 400 patients, family members, and providers in attendance to discuss and learn about the latest in CHD care. The conference also gave us the opportunity to train 14 Heart to Heart Ambassadors, and we now have 23 Ambassadors trained to assist members seeking support or who are looking for information to assist them in coping with their CHD.

We are currently working with ACHD programs across the United States and Canada to update our program directory both online and in print. A fifth edition of the ACHA/ISACHD Travel Directory was updated this spring to include 100+ national and international sites and the online program directory provided 2010 program data.

2010: This past year has been tremendous for ACHA.

Our biggest accomplishments this year are getting two exciting projects off the ground: the Heart to Heart Ambassadors program and the Research Empowerment in Adult Congenital Heart Disease (REACH) initiative.

Heart to Heart Ambassadors are trained in peer support for adults with congenital heart defects (ACHD) and family members of those with ACHD. The pilot program launched in June 2010 with a small class of active ACHA members. Since the program went live, ambassadors have helped at least 100 people connect to information they need to stay healthy and provided an experienced, sympathetic ear.

Beginning REACH was an especially thrilling accomplishment for ACHA. The federal government awarded ACHA and the Alliance for Adult Research in Congenital Cardiology $1 million to pilot CONGENERATE, an electronic health record (EHR) designed just for ACHD patients. What does that mean for those with ACHDs? First, it means improved research on congenital heart defects, which translates into better health care and resources for patients. Second, it will allow ACHA to create a mobile, electronic, personal health care record for patients – no more paying doctor’s offices to photocopy records and waiting until they transmit them to a new doctor, and no more wondering if health care records are complete. Patients will be able to take their record with them wherever they go.

Also this year with donor support, ACHA created two new educational brochures in partnership with the American College of Cardiology. The brochures provide tips for life-long heart health and target ACHD patients, as well as parents with children who have congenital heart defects.