ERN publication abstracts in laypersons language

It is often difficult for patients and their families to learn more about their condition, as most important studies are written in doctors’ jargon and are difficult for patients to understand.

The experts of the ERN GUARD-Heart and their patient representatives have set themselves the goal of summarizing important studies in the field of rare heart diseases, in which ERN GUARD-Heart members are involved, for patients and their families in language that is easy to understand for patients.

Here, important studies (original work) and guidelines will gradually be published in laypersons language.* All summaries have been written by rare heart disease experts, involved in the respective studies or guidelines, and revised and reviewed by patient representatives for comprehensibility.

We hope to contribute to the education of patients and their families about their disease and everything that is important to them in this context.


Ruth Biller, Chair of the European Patient Advocacy Group of ERN GUARD-Heart
Arthur Wilde, ERN GUARD-Heart Network Coordinator


* Guidelines are documents on a specific topic where experts propose ‘recommendations’ on how to diagnose and treat patients with specific diseases. The evidence underlying the recommendations is obtained from the published (peer-reviewed) literature, which undergoes a thorough review process once more before being accepted as sufficient evidence to support specific recommendations.
Original work are studies where a specific topic is addressed with the aim to provide an answer on a specific question. The studies selected are those in which members of the ERN GUARD-Heart participated.

Select a thematical area to find the summaries related to that area