OrphanAnesthesia - Getting the key points right for anaesthesia in patients with rare diseases

Sooner or later, every anaesthesiologist will provide care for patients that suffer from a rare disease, be it from comorbidities related or unrelated to their special diagnosis. Syndromes may be accompanied by a phenotype prone to complications during anaesthesia, but expert knowledge on rare diseases is not a given - usually. Therefore in-depth preparation on these patients is essential. Literature regarding anaesthesia and rare diseases is limited and some might be of poor quality. In this article we reflect on different resources and strategies to prepare for anesthesia on patients suffering from a rare disease. Special focus will be laid on quality indicators for medical information and we will introduce OrphanAnesthesia, a growing database of high-quality, disease specific and practical recommendations for anesthetic procedures.