Emergency letter generator

Here you can generate an emergency letter for medical use. An emergency letter aims to enhance interconnectivity between patients, primary care doctors, local hospitals and centres of expertise in order to prevent metabolic emergencies. The generator currently produces emergencyletters for patients with Fatty acid oxidation diseases (FAOD) and Glycogen Storage Diseases (GSD). The online protocol has been reviewed and approved by medical doctors from centres of expertise that are part of the MetabERN network. It can be made in multiple languages. Use the languageswitch at the top (right). MetabERN is a European non-profit network established by the EU to facilitate access to the best available care and to address the needs of all patients affected by inherited metabolic disease (IMDs) and their families, in EU countries and worldwide.

What is an ERN?

Why an emergency letter?

Emergency situations greatly affect the quality of life of patients with FAOD and GSD's and their families. If an emergency situation occurs, the first measures are taken at home. Possession of an emergency letter, and knowing how to use it, can then prevent life-threatening situations. Local or regional doctors are subsequently often the first healthcare providers to be involved in the emergency treatment. The emergency letter can then facilitate the communication until expert metabolic support can be sought. Expert advice is mostly necessary because these diseases are rare and specific knowledge is not readily available.

Create your emergency letter

Here you can generate a personalized emergencyletter.

We recommend that you keep the patient's accurate weight, disease name and date of birth at hand. We also recommend (especially for children) that you renew this letter every 6 months. Doctors and patients are encouraged to jointly fill the form to ensure that the information in the emergency letter is accurate.

Acknowledgement of contributors

These people contributed to the emergency letter as developed in the connect-metabERN study.

*Arianna Maiorana *Lut de Baere *Cinzia Bellettato *Sebastiaan te Boekhorst *Foekje de Boer *Annet Bosch *Julieta Bonvin *Sallago Lorenzo Botto *Michaela Brunner-Krainz *Thomas Casswall *Camilla Carøe *Maria Luz Couce Pico *Hanka Dekker *Dries Dobbelaere *Mari Alice Donati *Francois Eyskens *Enrique Lande Contreras Pulido *Terry Derks *Carolina Fischinger Moura De Souza *Marieke Fokkert-Wilts *Pilar Quijada Fraile *Sabine Fuchs *Sarah Grünert *Dorothea Haas *Michel Hochuli *Irene Hoogeveen *Anne Hugon *Svetlana Lajic *Daniela Karall *Dwight Koeberl *Isabelle Moenig *Marie-Cécile Nassogne *Philippe Labrune *Corine van Lingen *Elena Martín Hernández *Diego Martinelli *Klaus Mohnike *Chiara Montanari *Rossella Parini *Shamima Rahman *Magali Reyes *Alessandro Rossi *Maurizio Scarpa *Marit Schwantje *Anastasia Skouma *Pietro Strisciuglio *Maren Thiel *David Weinstein *Athanasia Ziagaki

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, English, Italian and Portuguese 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.

Choose language

Why an emergency letter?

Create your emergency letter

Can we ask a little bit of your time to improve the emergency letter?