Why do we exist?
Aside from the medical and clinical aspects of AGS, there are many problems that only those affected can solve among themselves. We are a nationwide point of contact for those affected, with regional group associations.
We want to address and resolve questions about coping with and dealing with the condition, as well as questions about education and the exchange of information, together.
Many AGS patients have felt left alone with their questions for years and have searched in vain for contact with others affected, because AGS is a relatively rare condition.
What are our goals?
We want to be a forum for information and experience exchange. For this purpose, we have created a contact list. There are informational brochures for classical AGS, non-classical AGS (late onset), and a pixie book for affected (sibling) children.
We publish informational brochures that explain AGS in detail and also include contributions from patients themselves. Those affected can read about the complex issues of AGS again and again. In addition, we send out a newsletter to all members twice a year, providing up-to-date information about AGS, dates and reports of meetings, personal experiences, and reports from members of our medical advisory board. We organize various meetings. Some are held in cooperation with qualified professionals and primarily serve education and information, while others are organized regionally by individual groups themselves and focus on sharing experiences and self-help. Through these measures, we want to improve therapeutic care for those affected by AGS and raise awareness of the possible problems associated with AGS.
Association members
Anyone affected by AGS and their relatives can become members of the initiative.
The current annual membership fee is 30 euros. Members are automatically invited to all meetings of the AGS Parents and Patients Initiative e.V. and kept informed about its activities.
Our organization
Our association consists of the board, a medical advisory board, and individual contact persons for specific topics.
