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.

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karolinska
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VKS
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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

Work in progress

Français

Download pdf file

Ελληνικά

Download pdf file

Nederlands

Download pdf file

Polskie

Work in progress

Português

Download pdf file

Svenska

Work in progress

emergency letter
emergency letter

Create an emergency letter

Here you can make your own emergency letter for a choice of diseases.

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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.

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Acknowledgement of contributors

The development of www.emergencyprotocol.net has been a process rather than one project….

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Get in contact

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.

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