Monday, July 27, 2026

Heart Foundation launches ACHD campaign on follow-up care

The German Heart Foundation has launched a nationwide information campaign for adults with congenital heart disease, known in Germany as EMAH. The initiative, titled Checkst Du? Geh erwachsen mit angeborenem Herzfehler um!, aims to raise awareness of regular cardiology follow-up and improve health literacy among patients and relatives.

The campaign addresses a growing patient population. According to the Heart Foundation, more than 350,000 adults with congenital heart disease now live in Germany. The number is increasing by around 5,000 to 7,000 people each year.

Many patients are not in specialist care

The Heart Foundation says a substantial share of adults with congenital heart disease are not receiving specialist follow-up care. Estimates cited by the organization point to more than 200,000 people, or 50 to 80 percent of the group, who are not connected to appropriate specialist services.

Reasons include gaps during the transition from pediatric cardiology to adult medicine and an underestimation of the need for lifelong monitoring. Even patients who appear clinically stable may develop complications years later.

Potential long-term issues include heart failure, arrhythmias, valve changes, pulmonary hypertension, infection-related valve complications and changes to the aorta. Many of these problems can progress gradually and may be noticed late by patients.

Campaign combines education and service information

The campaign at emah-check.de is under the patronage of Federal Health Minister Nina Warken MdB. It includes podcasts, videos, guide materials, dates for online patient seminars and a dedicated telephone consultation service.

A central component is the 216-page patient guide Leben mit angeborenem Herzfehler im Erwachsenenalter. It covers care structures, diagnostics, treatment, prevention, rehabilitation, psychocardiology and topics such as exercise, pregnancy, employment and insurance.

For patients searching for specialist practices, outpatient clinics and centers, the Heart Foundation also refers to its clinic and physician finder Dein Herzlotse.

Primary care physicians as key points of contact

The Heart Foundation sees general practitioners and other medical specialists as important referral points. They can inform adults with congenital heart disease about the need for specialist follow-up and refer them to certified cardiology practices or outpatient clinics when needed.

The initiative therefore addresses not only patients and families, but also professionals in medical care. Its goal is to strengthen continuity of follow-up and reduce avoidable risks for adults living with congenital heart disease.