Since the beginning of the week, the campaign “Every heart counts” has been running on digital advertising spaces at major train stations throughout Germany – including Berlin, Hamburg, Munich, Cologne, Frankfurt am Main, Stuttgart, Leipzig and Dresden. The Digital Out-of-Home campaign puts the petition to save the National Register of Congenital Heart Defects (NRAHF) on the big stage – in the middle of the ongoing budget negotiations.

For the first time in more than 20 years, there will be no more state funding for the National Register. With the expiration of funding from private foundations at the end of 2025, the NRAHF is now on the verge of collapse. Without a swift decision by the Bundestag and the Federal Ministry of Research, Technology and Space (BMFTR) on sustainable state funding, the end of multicenter research with one of the world’s largest data and biobanks on congenital heart defects is imminent.

Critical situation: Vital research resource at risk

The National Register has been the central research platform for congenital heart defects in Germany for over 20 years. It connects hospitals, the outpatient sector as well as researchers and those affected – and provides crucial insights into the causes and consequences of the most common organ malformation in humans. These are already contributing to improved prevention, therapy and aftercare. “We are at a very critical point,” warns Constanze Pfitzer, Scientific Director of the National Registry. If no solution is found now, long-term research will lose a research base that has been built up over two decades and is unparalleled internationally.”

Patients and researchers urge action

Concern is growing among the patient and parent associations represented in the Action Alliance for Congenital Heart Defects (ABAHF): “The registry is a central component of research on congenital heart defects – and thus a life insurance policy for more than 500,000 sufferers in Germany alone,” says Christina Pack, Chairwoman of the Board of JEMAH e. V. “If it breaks away, we will not only lose valuable data and samples for patient-oriented research, but also but also future opportunities for children, adolescents and adults with congenital heart defects.” Together with the kinderherzen Fördergemeinschaft Deutsche Kinderherzzentren e.V., the cardiology societies and the NRAHF, they are calling for the safeguarding of register-based research with their petition.

Strong public advocacy: well over 36,000 signatures

The joint appeal is meeting with an ever-increasing response: 15,430 citizens signed the official Bundestag petition in the summer – online and offline. Since autumn, the number of supporters on the platform innn.it has continued to grow – well over 36,000 people are now committed to the continued existence of the research platform. “This is a strong sign of solidarity that shows how much the registry moves people – because it enables research that improves life with a congenital heart defect,” says Pfitzer.

Public stage at the decisive moment

For a total of two weeks, the campaign for the common cause of patient associations and cardiology societies will run nationwide on digital screens from Ströer. Outdoor advertisers see themselves as responsible for making socially relevant topics visible with their wide reach. In this way, the media company offers a strong stage for the petition to save the heart registry. “We are extremely grateful to Ströer for this generous support,” emphasizes Professor Anselm Uebing, Chairman of the Board of the NRAHF. “The visibility of “Every Heart Counts” at train stations throughout Germany comes exactly at the decisive moment – in the middle of the budget negotiations.”

Research needs a future – decision now required

Around one million euros are needed annually for the data protection and ethics-compliant management of the register. What is vanishingly small compared to the consequential costs of chronic diseases is decisive for the preservation of a key resource that brings scientific findings directly into care. “The register now needs a clear commitment to state funding from 2026 so that research, which is indispensable for the long-term health and quality of life of those affected, can continue,” Uebing demands. “This is the only way to ensure that people with congenital heart defects receive the best possible health care and support into old age.”

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Every heart counts: Petition launched to preserve the heart register

Editor: X-Press Journalistenbüro GbR

Gender Notice. The personal designations used in this text always refer equally to female, male and diverse persons. Double/triple naming and gendered designations are used for better readability. ected.