Milestones to Appropriate Care

1973

The first published article on adult congenital heart disease, entitled, "The Pediatric Congenital Cardiac Becomes a Postoperative Adult. The Changing Population of Congenital Heart Disease," was published in 1973.

1990

The first American College of Cardiology (ACC) conference on adult congenital heart disease, entitled, "Congenital Heart Disease After Childhood: An Expanding Patient Population," occurred in 1990.

1996

In 1996, the Canadian Adult Congenital Heart Network (CACHnet), published the first consensus document addressing the care needs of specific defects in congenital heart disease. The full text can be found here.

1998

In 1998, ACHA was founded by patients and family members directly affected by Congenital Heart Defects. Starting with a website and a newsletter, and later expanding to conferences and events, ACHA was the first U.S. organization dedicated exclusively to meeting the needs of adults with Congenital Heart Defects.

2000-2001

The second and most recent ACC conference on the needs of adults with Congenital Heart Defects, the 32nd Bethesda Conference, convened in 2000. Its report was published and endorsed by ACHA in 2001. A summary of these recommendations can be found here. The full text can be found here.

2004

In 2004, ACHA was invited to participate in the first National Institutes of Health (NIH) working group on research needs in adult congenital heart disease. The group identified outreach, patient identification, and the establishment of a national ACHA research network as priorities. The report, published in 2005, can be found here.

2005

In 2005 ACHA was invited by the ACC to participate in a review of progress since Bethesda 32. The consensus was that little progress had been made on improving the access to and quality of cardiac care for adults with Congenital Heart Defects. ACHA was invited to participate in an on-going working group focused on accelerating progress for ACHDers.

In 2005 the ACC strengthened its commitment to the life-long needs of the congenital heart patient by establishing the subsection on Congenital and Pediatric Heart Disease. The ACHD working group became an on-going project of this subsection.

2006

In February 2006, ACHA, the Congenital Heart Information Network (CHIN), and the Children's Heart Foundation—supported by the ACC and others—convened the first national ACHD Lobby Day in order to push for funding of the initiatives identified in the NHLBI report. More information on Lobby Day 2006 can be found here.