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.
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.
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.
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.
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.
OrphanAnesthesia was conceived as European project. To ensure accessibility and standardization across countries worldwide, the primary language is English. Authors are welcome to translate their or other contributions into their native language in addition to the English version.
English-language recommendations undergo a peer-review process, usually involving native speakers. Translations (e.g., into Italian, French, etc.) are typically also prepared by native speakers; however, these versions are generally not subject to an additional formal review process, and translated versions may not always reflect the most recent updates of the English original.
English-language recommendations undergo a peer-review process, usually involving native speakers. Translations (e.g., into Italian, French, etc.) are typically also prepared by native speakers; however, these versions are generally not subject to an additional formal review process, and translated versions may not always reflect the most recent updates of the English original.
Due to the extreme rarity of some conditions, little research is conducted in these areas, and new scientific findings remain limited – particularly in the field of anesthetic care.
Nevertheless, we aim to update each recommendation approximately every five years, similar to typical international guideline revision cycles. In practice, however, this can be challenging. Original authors may no longer be reachable after several years, and identifying new contributors can take time. For this reason, we cannot guarantee that every recommendation is less than five years old.
Each document clearly states the date of its creation and, when applicable, its revision or update. This ensures complete transparency regarding the up-to-dateness of the recommendations.
Everyone who contributes to a recommendation – authors and reviewers alike, whether during its initial creation or a later update – is acknowledged within the document (with their consent) to recognize and appreciate their support of the project.
If translated versions of a recommendation are available, please note that they may not always reflect the most recent updates of the English original.
Nevertheless, we aim to update each recommendation approximately every five years, similar to typical international guideline revision cycles. In practice, however, this can be challenging. Original authors may no longer be reachable after several years, and identifying new contributors can take time. For this reason, we cannot guarantee that every recommendation is less than five years old.
Each document clearly states the date of its creation and, when applicable, its revision or update. This ensures complete transparency regarding the up-to-dateness of the recommendations.
Everyone who contributes to a recommendation – authors and reviewers alike, whether during its initial creation or a later update – is acknowledged within the document (with their consent) to recognize and appreciate their support of the project.
If translated versions of a recommendation are available, please note that they may not always reflect the most recent updates of the English original.
If you cannot find a recommendation for a specific rare disease, it may not have been created yet. Because thousands of rare diseases exist, it is unfortunately not possible to cover all conditions at once.
You are very welcome to contact us and suggest the disease. We will gladly check whether a recommendation is already in progress or whether the topic can be added to our list of future projects. Suggestions from clinicians, researchers, patients, and patient organizations are highly appreciated.
You are very welcome to contact us and suggest the disease. We will gladly check whether a recommendation is already in progress or whether the topic can be added to our list of future projects. Suggestions from clinicians, researchers, patients, and patient organizations are highly appreciated.
Yes. Since May 2014, one to two recommendations per month have been published as supplements to Anaesthesiologie & Intensivmedizin, a medical journal and the official publication of the anesthesiology societies in Germany. As part of this journal, the recommendations are fully citable.
The OrphanAnesthesia recommendations are primarily intended for healthcare professionals – especially anesthesiologists, as well as clinicians in related fields such as intensive care or emergency medicine – who care for patients with rare diseases. The content is written to support medical decision-making and may be too technical for non-medical readers.
For patients and their families, we provide the Patient Safety Card, which can be downloaded free of charge. You are welcome to share this card with your treating physicians. It includes a reference to OrphanAnesthesia, where clinicians may find helpful information on the anesthetic management of your rare disease.
For patients and their families, we provide the Patient Safety Card, which can be downloaded free of charge. You are welcome to share this card with your treating physicians. It includes a reference to OrphanAnesthesia, where clinicians may find helpful information on the anesthetic management of your rare disease.
Absolutely – participation is welcome from colleagues worldwide!
You can create or revise a recommendation, suggest reviewers, share information about patient organizations, or provide other helpful material. Every contribution is appreciated!
We also warmly encourage members of national anesthesiology societies to reach out to us regarding potential collaborations or other forms of cooperation. We are grateful for every opportunity to strengthen international partnerships and hope that, together, we can help improve patient safety in the field of anesthesia.
Please note that in some hospitals, access to the OrphanAnesthesia website may be restricted by institutional network settings. If this is the case in your workplace, we would be grateful if you could help raise awareness and ensure that colleagues are able to access and use the website.
Individuals without a medical background can also support OrphanAnesthesia – for example, through donations or by helping to increase awareness.
Please feel free to contact us!
You can create or revise a recommendation, suggest reviewers, share information about patient organizations, or provide other helpful material. Every contribution is appreciated!
We also warmly encourage members of national anesthesiology societies to reach out to us regarding potential collaborations or other forms of cooperation. We are grateful for every opportunity to strengthen international partnerships and hope that, together, we can help improve patient safety in the field of anesthesia.
Please note that in some hospitals, access to the OrphanAnesthesia website may be restricted by institutional network settings. If this is the case in your workplace, we would be grateful if you could help raise awareness and ensure that colleagues are able to access and use the website.
Individuals without a medical background can also support OrphanAnesthesia – for example, through donations or by helping to increase awareness.
Please feel free to contact us!
You can reach us at This email address is being protected from spambots. You need JavaScript enabled to view it.
We kindly ask for your understanding that we are unable to answer individual medical questions or provide personal clinical advice.
We kindly ask for your understanding that we are unable to answer individual medical questions or provide personal clinical advice.