Disclaimer - terms and conditions of use
www.emergencyprotocol.net is a tool designed to help health care providers and (families of) patients with certain FAODs and GSDs to generate a personalized emergency letter. This tool cannot replace health care as provided. Neither should this tool be considered a substitute for expert metabolic advice.
www.emergencyprotocol.net intends to be supportive. The importance cannot be emphasized enough, of good communication between patients/families, the medical expert team and local health care providers. Shared care is shared responsibility!
In general, there is very little clinical evidence for the management of IEM patients. This tool will generate a personalized emergency letter taking account of what is regarded as the current best practice. This is merely based on expert opinions. The medical and contact information is scrutinized carefully, but the website and emergency letters may still contain errors. Therefore, each emergency letter needs to be carefully checked by the person who has generated it.
Health care providers are invited to discuss with patients and patient representatives, whether, when and how emergency letters will be updated in the best way and which role patients/families may play in this process.
The medical information and algorithms are applicable to most patients, but there may be situations when alternative management is preferable or appropriate.
The collaborators and editors of www.emergencyprotocol.net are not liable for the consequences of any use of this tool. The users of this tool indemnify the collaborators and editors against claims from third parties related to the use of information on this website.