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 centers 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.
Information leaflet
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.
Deutsch
English
Español
Français
Ελληνικά
Italiano
Nederlands
Türkçe
Polskie
Português
Svenska
Work in progress
Create an emergency letter
Here you can make your own emergency letter for a choice of diseases.
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….
Can we ask a little bit of your time to improve the emergency letter?
We kindly ask you to help us to review the information in the emergency letter and the practical use of the emergency letter in your situation. We have made a questionnaire, aimed at getting your insights, whether you are a professional or a parent/patient. The questionnaire is available in Dutch (here), English (here), Italian (here) and Portuguese (here) only (for the time being). It will take approximately 10 minutes to complete. Thank you, in advance
If you have any comments, queries or suggestions, we appreciate it if you contact us. Your email will be received and if necessary distributed to specific members of the working group by the Dutch patient group for IEM, called VKS.