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. ‘OrphanAnaesthesia’ refers to the anaesthetic approach and considerations for 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 of the Institute National de la Santé et de la Recherche Médicale (INSERM) in Paris, France founded in 1997 and supervised by administrative, editorial, and scientific boards. Orphanet provides information about rare diseases including: patient organisations, scientific research projects, and referral centres. Orphanet contributes disseminating our OrphanAnesthesia guidelines.
What is the vision of OrphanAnesthesia?
The aim of the OrphanAnaesthesia project is the publication of guidelines for the anaesthetic management of patients suffering from rare diseases, with the hope of increasing the safety for patients. To improve patient safety, OrphanAnaesthesia hopes to gain wide dissemination for guidelines produced. Such dissemination would be greatly advanced by endorsement of European anaesthesiology societies.
Why are the guidelines published in English?
OrphanAnaesthesia was planned originally as primarily a European project. The decision to publish the recommendations in English was made to facilitate international collaboration, dissemination, adoption, and endorsement. Now, it is already a completely international project. Translations into other languages are our next aim, and we are happy about anaesthetists ready to provide translation into their native language.
How can I contribute to OrphanAnesthesia?
All medical colleagues are welcome to contribute to OrphanAnaesthesia.We have an international base of support and engagement. You can contribute by preparing a recommendation for review; volunteering to reviewer or translate a recommerndation into your lanmguage. You also may name usa rare disease you think should have or needs a recommendation; or you may submit information about patient organisations or other relevant materials. Please do not hesitate to contact us!
Are OrphanAnesthesia recommendations citable for academic purposes?
All OrphanAnaesthesia recommendations published in the monthly supplement of the medical journal Anästhesiologie & Intensivmedizin (Anästh Intensivmed). All OrphanAnaesthesia recommendations are being published on our website, and then as soon as possible also in Anästhesie & intensivmedizin.
Please find the puiblished recommendations at www.ai-online.info