Emergency Protocols for patients with FAOD or GSD | 22 June 2021
How can you prevent emergencies at home? How can you contact the hospital directly?
Emergency situations are a major burden for many patients suffering from Inherited Metabolic Disorders 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.
In the CONNECT MetabERN project (2018-EU-IA-0173), metabolic specialists have collaborated in an activity regarding emergency protocols to generate automatically emergency letters for patients with fatty acid oxidation disorders (FAOD) and glycogen storage diseases (GSD). In this regard, a scientific paper has recently been published in the Journal of Inherited Metabolic Disease.
This webinar aims to inform patients about the emegencyprotocol.net website, which offers a generator for emergency letters. During the webinar, participants will have the opportunity to watch a demonstration of how emergency letters can be generated and what are the benefits of these letters for patients and physicians. The online protocol is reviewed and endorsed by Centers of Expertise that are part of the MetabERN network.
- Introduction by Maurizio Scarpa, MetabERN Coordinator 16:30 – 16:40
- Background, results of the questionnaire, next steps by Terry Derks, C-FAO Subnetwork Coordinator 16:40 – 17:00
- Live demonstration by Bas te Boekhorst, Patient Connect 17:00 – 17:20
- Q&A’s 17:20 – 18:00