Home › About ACHA › Our Work
About ACHA
Our Work
ACHA Toolkit Initiative
All Congenital Heart Defect survivors should have the "toolkit" they need to protect and improve their life-long health and well-being. Here are some of the "tools" we offer for patients and families:
- ACHD Clinic Directory—ACHA surveys ACHD programs nationally and offers the most extensive national list of ACHD clinics available. In addition to contact information, this list provides information about the services and training offered at each center. The ACHD Clinic Directory is a joint project between ACHA and the International Society of Adult Congenital Cardiac Disease (ISACCD).
- ACHA Personal Health Passport—A printable PDF of ACHA's Personal Health Passport is available by clicking here. To use our electronic Personal Health Passport on-line, click here. To receive a print Personal Health Passport in the mail, e-mail info@achaheart.org.
- ACHA online Resources—ACHA's website offers extensive information designed to educate both ACHD patients and health care professionals about the special needs of adults with heart defects. Click here to see the available online resources..
- ACHA online Message Board—The ACHA online Message Board offers peer support and information to patients and families living with Congenital Heart Defects. The board is carefully moderated to ensure that medical misinformation is not shared as well as to maintain a safe and supportive community. To join the ACHA Message Board, click here.
- ACHA conferences—ACHA offers national and regional conferences designed to provide patients and families with the latest information in ACHD care and treatment, plus opportunities to network, plan local activities, and have fun.
- ACHA-sponsored medical training—Currently there is a severe national shortage of cardiologists trained in the special needs of ACHD patients. In conjunction with our Medical Advisory Board, ACHA offers medical professionals training in ACHD care, with courses taught by national experts. For more information on ACHA medical training and CME, click here.
- ACHA's Heart Matters newsletter—ACHA's newsletter, Heart Matters, offers patient and family stories, medical and scientific articles, updates on ACHA activities, and other information essential to the Congenital Heart Defect community.
ACHA Outreach and Advocacy Initiatives
As the only national organization devoted exclusively to the needs of adult survivors of Congenital Heart Defects, ACHA speaks out in the following areas:
- Media outreach—Are you aware that Congenital Heart Defects are the most common form of birth defect, and affect approximately 1.8 million Americans? Did you know that there are now more adults than children living with Congenital Heart Defects? Did you realize that most adults with "repaired" defects are no longer getting the care they need to protect their health? These are some of the issues ACHA targets for media awareness. For examples of ACHA in the media, click here.
- Medical and scientific outreach—Through serving on advisory committees, initiating joint projects, attending professional and medical conferences, and public speaking in a variety of venues, ACHA educates the scientific and medical organizations on the unmet needs of Congenital Heart Defect survivors. For examples of ACHA's outreach in the scientific and medical community, click here.
- National ACHD Lobby Day—ACHA promotes legislative initiatives to raise awareness and resources for the long-term survivors living with Congenital Heart Defects, and sponsors a yearly ACHD Lobby Day in Washington, DC. For more information about legislative initiatives, click here.
ACHA Research Initiatives
Currently there is a severe shortage of research on demographics and long-term outcomes in Congenital Heart Defects. ACHA promotes ACHD research through the following initiatives:
- ACHA's ACHD Research Symposium—In September of 2006, in conjunction with its Fourth National Conference, ACHA will hold the first research symposium ever targeted exclusively to adults with Congenital Heart Defects. This event will bring together internationally-known researchers in adult congenital heart disease to focus on key challenges facing the ACHD community, and further develop multi-center research. For more information on the ACHD Research Symposium, click here.
- ACHA co-sponsored ACHD research—ACHA is currently co-sponsoring research initiatives to examine insurance status, diagnoses, and demographics among patients currently seen at national ACHD programs. For more information on ACHA co-sponsored ACHD research, click here.
- National ACHD registry initiative—In collaboration with the American College of Cardiology (ACC) and in conjunction with the ACC Working group on Adult Congenital Heart Disease, ACHA is currently working on developing and obtaining funding for a national ACHD registry. For more information on the ACHD registry, click here.