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.
The emergencyprotocol.net 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.
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, English, Italian and Portuguese. It will take approximately 10 minutes to complete.
Thank you, in advance!
