On the occasion of Rare Disease Day on 28 February, the German Society of Anaesthesiology and Intensive Care Medicine (DGAI) refers to its international project OrphanAnesthesia. The freely accessible online database provides standardised, peer-reviewed recommendations for anaesthesiological care and emergency care for patients with rare diseases. Recommendations are currently available for more than 230 clinical pictures.

According to the professional society, rare diseases often combine with a demonstrably increased risk of anesthesiological complications. This places high demands on anesthesia teams in terms of preparation, planning and implementation – often under time pressure. OrphanAnesthesia aims precisely to identify risks at an early stage through structured, evidence-based information and to make care safer – both in planned procedures and in emergency situations.

Since the beginning of 2025, the platform has been further expanded. Among other things, recommendations on long QT syndrome, congenital insensitivity to pain, choanal atresia and childhood nephrotic syndrome as well as other clinical pictures have been included. The recommendations contain practical advice on the choice of anesthesia procedure, perioperative planning and postoperative monitoring. They are supplemented by emergency information according to the internationally established ABCDE scheme.

The project was initiated in 2005 by the Scientific Working Group on Pediatric Anaesthesia of the DGAI. Today, further development is carried out in international cooperation with Orphanet, the European Society of Paediatric Anaesthesia (ESPA), the European Society of Anaesthesiology and Intensive Care (ESAIC) and other European professional societies. A global network of anaesthesiologists and experts in rare diseases is involved in the preparation and assessment of the recommendations on a voluntary basis.

In 2025, OrphanAnesthesia recorded more than 100,000 hits worldwide – a significant increase that underlines the growing international interest. The DGAI calls on colleagues to continue to actively participate, for example by preparing or reviewing recommendations and by passing on the information to patient organisations. The continuous expansion of the database remains a central task in view of the large number of rare diseases.

Editor: X-Press Journalistenbüro GbR

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