The English word "orphan” harks back to the Greek term „orphanos“ and is nowadays also used to describe rare diseases. Because OrphanAnesthesia is an internationally oriented project, we use the English spelling.

In the European Union, a disease is considered rare if it affects no more than 5 in 10,000 people. Currently, about 8,000 conditions are classified as rare, with several hundred newly described each year. It is estimated that about 4 million people in Germany, 30 million in the European Union and around 300 million people worldwide live with rare diseases.

Since 2005, the Scientific Working Group on Paediatric Anaesthesia of the German Society for Anaesthesia and Intensive Care Medicine (DGAI) has been developing a database containing information on rare diseases in the context of anesthesiology, a project co-founded and for many years led by Professor Münster. Recognizing its importance, the DGAI presidium endorsed the project early on, and has officially supported it ever since.

The aim of OrphanAnesthesia is to publish recommendations for the anesthetic management of patients with rare diseases, thereby contributing to improve patient safety. In the long term, the project seeks support and collaboration from anesthesiology societies across Europe and beyond.

No. All OrphanAnesthesia recommendations and resources are freely accessible to everyone worldwide. There are no fees for viewing, downloading, or using the recommendations. The project is committed to providing open access to support clinicians, patients, and caregivers globally and to improve patient safety.

OrphanAnesthesia is a voluntary, non-commercial initiative. The project is primarily supported through the unpaid contributions of clinicians and researchers who donate their time and expertise alongside their regular clinical and academic responsibilities.
We receive no commercial sponsorship. Additional support may come from professional societies or small institutional resources, but the core of the project relies on voluntary engagement and collaborative effort.
At present, financial support is provided exclusively by the DGAI. Should individual projects in the future receive funding from other sources, this will be clearly and transparently disclosed.

Each OrphanAnesthesia recommendation provides a concise summary of the rare disease, including key clinical features and relevant emergency information. The document then addresses several aspects of anesthetic care, such as airway management, perioperative monitoring, postoperative management, possible complications, considerations for ambulatory anesthesia, and obstetric anesthesia.
The recommendations are primarily written for anesthesiologists, and the information is tailored to the specific needs of anesthetic management. However, clinicians in related fields – such as intensive care medicine or emergency medicine – may also benefit from the content.
Due to the rarity of these conditions, evidence-based information is not always available for every aspect of anesthetic management. In such cases, recommendations may rely on case reports, expert opinion, or clinical experience.
Because recommendations are intended as guidance rather than strict protocols, they provide a framework to support clinical decision-making rather than prescriptive rules. At the same time, every patient is unique, and individual circumstances must always guide clinical care.

Suggestions for new recommendations on rare diseases can be submitted by clinicians, researchers, and patients alike, provided that the condition is not already covered on our website. In some cases, colleagues may already be working on a new recommendation – feel free to contact us if you would like to check whether a topic is currently in progress.
Proposed diseases are reviewed by the OrphanAnesthesia team to assess whether a new recommendation is appropriate for the project. Once a proposal has been accepted, suitable authors are sought – of course, doctors and scientists who submit a proposal are also welcome to write the recommendation themselves.
Each recommendation undergoes a structured peer-review process. It is reviewed by an anesthesiologist with specific expertise in the rare disease as well as by a disease specialist from another discipline who is knowledgeable about the underlying condition. After both reviews are completed and any necessary revisions have been incorporated is the recommendation published on the OrphanAnesthesia website, where it is freely accessible to clinicians worldwide.

The time required to create and publish a recommendation varies. This depends in part on the availability of the authors, as all contributors support OrphanAnesthesia voluntarily alongside their clinical and academic duties. The same applies to our reviewers.
Finding suitable reviewers can be particularly challenging – especially for very rare conditions with only a few documented cases worldwide. We aim to involve reviewers with the highest possible expertise in anesthesiology or another discipline relevant to the specific rare disease. Because qualified experts may be extremely limited, the search for reviewers can sometimes take several weeks, and occasionally even months.
Despite these challenges, we work hard to support the process at every stage and to keep the timeline from submission to publication as short as reasonably possible. Once both reviews are completed and any necessary revisions made, the recommendation is published on our website and made freely accessible to clinicians worldwide.
If you have expertise in a particular rare disease or group of conditions and are interested in contributing as an author or reviewer, we would be very pleased to hear from you.