a project of the German Society of Anesthesiology and Intensive Care Medicine

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OrphanAnesthesia - FAQ

What does “OrphanAnesthesia” stand for?

“Orphan” has its origin in the Greek language (ορφανός) and was first applied 1983 for drugs used in rare diseases. “OrphanAnesthesia” shall describe any fact and situation in context with the anaesthesiological management of patients with rare diseases.

What is a rare disease?

A disease is called “rare” when it affects only a small number of patients. This definition can vary between countries and over time. In Europe a disease is considered to be rare when it affects not more than 5 of 10,000 people. 

How was OrphanAnesthesia started?

The project was initiated by the Scientific Working Group of Paediatric Anaesthesia of the German Society of Anaesthesiology and Intensive Care Medicine in 2005. At this time, the idea of an open access database with information about anaesthesia in patients with rare diseases was born.

What is Orphanet?

Orphanet (www.orpha.net) is a French working group that has been founded at the Institute National de la Santé et de la Recherche Médicale (INSERM) in Paris, France in 1997. Orphanet provides information about rare diseases including patient organizations, scientific research projects and expert centres. Orphanet is supervised by an administrative, editorialand scientific board.  Orphanet contributes disseminating our OrphanAnesthesia guidelines. 

What is the vision of OrphanAnesthesia?

The aim of the project OrphanAnesthesia is the publication of guidelines for the anaesthesiological management of patients suffering from rare diseases and thus increasing the safety of patients. In the long term, OrphanAnesthesia aspires the endorsement of all European anaesthesiological societies.

Why are the guidelines published in English?

The project OrphanAnesthesia was planned as an European project right from the beginning.  Herefore, we decided to publish the guidelines in English basically. Nevertheless, all authors are reinforced to provide translation at least in their native language as well.

How can I contribute to OrphanAnesthesia?

We would explicitly invite every college in Europe to contribute to OrphanAnesthesia. They can participate by preparing a guideline, recommending a reviewer or disease expert or by providing us with information about patient organizations or other relevant materials in the field of rare diseases. Please do not hesitate to contact us.

Are OrphanAnesthesia guidelines quotable?

Starting with issue 5/2014, we also publish the OrphanAnesthesia recommenations as a monthly supplement of our medical journal A&I (Anästhesiologie & Intensivmedizin). Thus they can be accessed and downloaded via www.ai-online.info.

As being part of the journal, the recommendations are also quotable. Please find a list of all guidelines published in A&I on http://www.orphananesthesia.eu/en/rare-diseases/guidelines-published-in-aai.html

 




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