From President Jan van Leeuwen
The Association for Angio Edema Netherlands is an association with about one hundred and fifty members. We deliberately do not use the name “hereditary” because we represent the hereditary as the acquired angioedema. There are good facilities in the Netherlands; we can always go to university hospitals because the information is stored in the European knowledge center AMC-UVA Amsterdam. In addition, other universities also have specialized knowledge. The biggest bottleneck is with family doctors and smaller hospitals, where little or nothing is known about our condition. We are busy bringing knowledge to those hospitals. Together with the society of family doctors, we have developed a brochure for members to request from the association and hand over to the doctor. It explains how he or she can find all the information on the Internet. Also, with the AMC-UVA Amsterdam, we have developed a special app for the youngsters. They can then chat with fellow sufferers, request information and advice from a nurse or specialist. We also have a special app for all patients where they can keep a diary, download and upload photos, and send everything via e-mail to their specialist to ask for advice. They can also keep their medication list there with use and dosage.
