Help us to improve the online emergency letter and our website www.emergencyprotocol.net!
Do you (or does a family member) have a liver glycogen storage disease (GSD) or fatty acid oxidation disorder (FAOD)? Or are you a professional who is interested in online generation of emergency letters? We need your help in understanding how the emergency letters and the website serves your needs.
This questionnaire will take 10 minutes of your time and your feedback is of tremendous value to us. If possible, we kindly ask that patients over 12 years of age complete this questionnaire at least together with the parent or carer. If the patient is 12 years of age or younger, we kindly ask the parent or carer to complete the survey. In the event that there are several GSD/FAOD patients per family, we kindly ask you to complete the questionnaire for each patient. Your answers will be stored and analyzed anonymously.
For more information, please send an email to firstname.lastname@example.org or visit our website.