To explain the use of the emergency letter for parents and patients with FAOD and GSD, a pdf leaflet has been developed. This leaflet also contains tips for practical use. It is available in several languages.
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.
Acknowledgement of contributors
The development of www.emergencyprotocol.net has been a process rather than one project….