Secure research, save lives!
A vital research lifeline is at risk.
For the first time in over 20 years, Germany’s National Register for Congenital Heart Defects (NRCHD) has not received any public funding since 2025. Without renewed government support beyond this year, this vital research infrastructure will collapse by the end of 2025.
The Heart Register is now pinning its hopes on rescue from Germany’s newly established Federal Ministry for Research, Technology and Space (BMFTR) and the German Bundestag — this is the last chance to save one of the world’s most important resources for studying the most common human organ defect.
A Matter of the Heart
We are fighting for the Registry.
Michelle Wagner's daughter, Edith, was born with a serious heart defect. Surgery at a children's heart center saved Edith's life. Research is important to ensure that things continue to go well for the 2-year-old and her family.
As the mother of a heart child, I know only too well: The work of the National Registry is priceless and absolutely essential.
Jonas was only eight months old when his parents enrolled him on the National Register. Perfect timing: He became the 50,000th participant. Today, the 10-year-old is the best brother to his siblings and the greatest joy for his parents, Katrin and Patrick.
When our youngest son needed heart surgery, our world stood still. He is now a big schoolboy, full of energy, but he is always waiting for his next operation.
We are incredibly grateful for every day we have with him. Help us ensure a brighter future for him and for all children with heart conditions by supporting life-saving research.
Forty years ago, pediatric heart surgeons gave Christina Pack a second birthday, as she puts it. Today, the lawyer advocates for young people and adults with congenital heart defects (ACHD), many of whom face major hurdles in their medical care. She also serves on the board of JEMAH, a self-help organization.
As an adult living with a congenital heart defect, I would like to thank you for every single signature. Research with the NRCHD gives us a future. Your signature in support of the Registry gives us hope.
Many parents of children with congenital heart defects know from their own experience how crucial research with registry data is. So do Emilia’s parents – their daughter underwent surgery in June 2024, when she was just four weeks old.
As parents of a heart warrior girl, we think it would be unacceptable not to continue the registry. We benefit from decades of research – and we want other children to have the same chances in the future.
Johanna Schlögl was born in the early 1990s with a complex heart defect. She had surgery as a young child, and in her late twenties she received a new heart valve via catheter procedure. She remains deeply grateful for the possibilities of modern medicine.
We live right in the middle of society – we have jobs and families, we’re active in our communities, in sports and culture. That this is possible, we owe to medical progress and research. That’s why I sincerely ask for your support for the register – for all of us affected, and for all of us together.
When Paul Patze was born, a doctor told his mother she should get him an instrument so he’d have something to do in a wheelchair, recalls the now 20-year-old trainee bank clerk. Born with a congenital heart defect, he first became a swimmer, then a water polo player and lifeguard, before training for his first half marathon – the Händel Run at the 22nd Central German Marathon. On Sunday, October 12, 2025, the registry participant successfully crossed the finish line for “Jedes Herz zählt.”
If my parents hadn’t sent me to sports so early, I’d never be as healthy as I am today. That’s exactly what keeps me going. I ran this half marathon for everyone who can’t. Stopping state funding for the National Heart Register would be a disaster for all people born with a heart defect.
We stand with you
Every heart counts!
Guys, it can’t be that the National Register for Congenital Heart Defects just gets shut down! Hundreds of thousands of people in Germany depend on the research it makes possible. Sign, spread the word, make some noise!
Why is this important?
One in every 100 babies is born with a congenital heart defect.
Every ninety minutes, a child is born in Germany with a congenital heart defect. Every year, around 7,000 newborns are affected by this most common congenital organ malformation in humans. Thanks to medical advances, well over ninety percent of them now reach adulthood, even with a severe heart defect. However, many are not cured.
More than 500,000 children, adolescents and adults in Germany are living with a congenital heart defect – and the number continues to rise. Over 60,000 patients have voluntarily entrusted their data and biological samples to the Heart Register, hoping for better treatments and a higher quality of life well into old age. They all depend on one thing: continuous research. Let’s not let them down.
Many need lifelong medical care — and without research, too much remains uncertain.
„We're here to make sure that anyone with a congenital heart defect can grow old with the best health possible. To achieve this, we need to improve our understanding of these conditions. No two heart defects are the same: there are more than 200 different malformations, each one rare."
Priv.-Doz. Dr. Constanze Pfitzer, Specialist in paediatrics and adolescent medicine at the Clinic for Congenital Heart Defects – Paediatric Cardiology at the German Heart Centre Charité (DHZC) and Scientific Director of the NRAHF.
For a long life. And a good quality of life.
„To provide people with congenital heart defects with the best possible care well into old age, we must study the disease pathways of many thousands of affected individuals."
Prof. Dr. Dr. Gerhard-Paul Diller, Director of the Clinic for Cardiology III: Congenital Heart Defects (EMAH) and Valvular Heart Disease at Münster University Hospital (UKM).
Research requires data and samples.
„For improved prevention and new therapies, international research relies on the NRCHD’s globally unique treasure of data and biological samples."
Prof. Dr. Marc-Phillip Hitz, Specialist in paediatrics and human genetics, Director of the University Institute for Medical Genetics at Oldenburg Hospital.
What does the National Registry achieve?
The National Register for Congenital Heart Defects (NRAHF) holds one of the world's largest research databases and is the only voluntary patient register of its kind.
Over decades, the registry has collected data and samples from more than 60,000 patients. With this broad database, the internationally renowned research institution enables important long-term research to improve the life expectancy and quality of life of people with congenital heart defects.
Scientists from various disciplines use the registry to conduct joint research into the causes, progression and consequences of congenital heart defects – in close collaboration with hospitals and medical practices, and often across national borders. This is the only way to minimize life-threatening risks and develop optimal prevention and longterm-treatment strategies for each patient.
Strong Public Support
New Momentum from Ströer
15,430 citizens have signed the official Bundestag petition to save the Heart Register – both online and offline. Since autumn, the number of supporters on the platform innn.it has continued to grow: around 38,000 people are now standing up for the preservation of the Register. A powerful sign of solidarity!
In November, Ströer, one of Germany’s largest media and advertising companies, added fresh momentum. Starting on 3 November, Ströer supported “Every Heart Counts” with a 14-day digital out-of-home campaign. “Every Heart Counts” lit up Ströer’s digital screens at major train stations in Berlin, Hamburg, Munich, Cologne, Frankfurt am Main, Stuttgart, Leipzig, Dresden, and many other cities.
Let’s stay committed to ensuring the heart registry can continue to improve lives – now and for future generations.
Join in!
Together we can save the Registry. Every heart counts – now double!
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The fastest way: Sign online now at innnit and share it with everyone you know. Simple, fast, and powerful!.
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Want to collect signatures in person? You can! – Just download the signature sheet, print it, and start gathering support!
New to innn.it?
Here’s how it works in just 2 clicks!
Add yor voice on innn.it:
Enter your first name, last name, email, and zip code. Click “Sign now.” Done! You’ll receive an email with a confirmation link. Just click it – that’s it!
Collect Signatures Yourself
Want to gather support for “Every Heart Counts” in person? Signatures on paper count too. Here’s how:
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Download our printable signature sheet for your collection. Make as many copies as you need. And off you go!
Download PDF signature sheet -
Upload your completed lists here at any time, once your collection campaign is finished.
Upload completed lists -
We’ll count all valid signatures together and publish the results.
Every heart, every voice counts – now more than ever!
Want to join forces?
Great!
Would you like to take action in your neighbourhood, with friends, or together with your colleagues? Want to support us on social media? Go for it – every action, no matter how small, makes a difference!
Poster to share
For your social media channels
Poster for printing
Crop marks are included, making it suitable for professional printing.
Social media video
For use on your social media channels
Ströer campaign motif (portrait format)
For use on your social media channels
Can I donate?
Sure!
Whether big or small, whether through everyday purchases or a one-time gift
— every donation makes a difference for research with the National Registry.
You can select the appropriate option here:
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Thank you from the heart!