Welcome to the ERN-LUNG BREATHeREGISTRY for respiratory diseases

The BREATHeREGISTRY is a European registry that records as many people as possible who are affected by rare respiratory diseases. Patients can register in the system and enter their data. Experts for specific rare diseases can contact patients via e-mail, if they are appropriate for other disease specific registries, studies or clinical trials.

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Need help? Please have a look at our manual or let our experts explain it to you on youtube.


  • More than 7,000 different rare diseases are known across Europe.
  • Some of them affect a few thousand people, others only a few patients. Many of those affected are restricted in their everyday life due to their illness or have a reduced life expectancy.
  • At the moment, little is known about many clinical entities, the time it takes to diagnose is often long.
  • European Reference Network for Rare Respiratory Diseases (ERN-LUNG) has developed a Population Registry that is intended to enable comprehensive data collection from those affected with rare diseases of the lungs or the airways.

How can patients use the BREATHeREGISTRY?

  • Affected persons or their relatives can register themselves and then share medical data with the scientists. Data protection is always guaranteed.
  • As soon as patients have entered their data and consented to their data being passed on to the previously named colleagues, this group of experts will be informed of the new registration.
  • The researchers can now contact the patients via an e-mail function in the registry and, e.g. inform them about disease-specific registry use cases or clinical trials and motivate them to cooperate.
  • This gives patients the opportunity to be informed about new studies and registry projects at any time and to support research in the field of rare respiratory diseases, which is most important to them.

Benefits for patients

  • Potential participation in clinical trials, disease specific registries and research projects.
  • Get in contact with disease specific experts in Europe.
  • Improve clinical research in rare respiratory diseases.