Generic emergency protocol for patients with fatty acid oxidation disorders (FAOD) and glycogen storage diseases (GSD).

Emergency situations are a major burden for many IEM-patients and their families. Having an emergency letter and knowing how to use it can prevent life-threatening situations and will optimize communications between parents and doctors.

This website offers a generator for emergency letters. It has the goal to generate interconnectivity between IEM-patients, primary care physicians, local hospitals and the centres of expertise to prevent metabolic emergencies. The online protocol is reviewed and consented by specific Centers of Expertise that are part of the MetabERN-network.

MetabERN is a European non-profit network established by the EU to facilitates access to the best available care and address the needs across the border of all patients affected by inherited metabolic disease (IMDs) and their families.

The CONNECT MetabERN project: towards personalized emergency letters

This generic protocol works on the basis that the key measure for many inborn errors of metabolism (IEM) emergency protocols is to prevent catabolism and subsequent metabolic decompensation by the promotion of anabolism.

An initial version of a website to automatically generate emergency letters for patients with hepatic GSD was used in The Netherlands by the UMCG. Metabolic specialists from many countries worldwide have collaborated in the CONNECT MetabERN project to improve and expand the emergency letters and their availability for HCP and patients.

By using www.emergencyprotocol.net, personalized emergency letters can be automatically generated for (families and) patients with the following fatty acid oxidation disorders (FAOD) and glycogen storage diseases (GSD).

Download the PDF with more information: Background emergency protocol.