The association provides information to young girls and their parents, adult women, family
members and anyone looking for more information on this condition.
The association can also be a source of information for healthcare workers (nursing staff,
doctors, physiotherapists, etc.).
What kind of information?
| Flyers | The association has various brochures and information booklets about Turner Syndrome available for young girls, adults and doctors. |
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| Information days | Information sessions, about medical or social topics, are regularly organised. Doctors and other speakers are then invited to explain the topic in more depth. |
| Magazine | Every trimester a newsletter containing a lot of informative articles and reports on seminars is published for members of the association. |
| Video | A few years ago a video about Turner Syndrome was made with medical information and testimonies of girls and their parents (Title: "Seen from the moon, we are all the same size ...") |
| Doctors, paramedics and students | They can call upon us for scientific articles, research papers and collaboration in scientific research. |
You're not alone!!
Being confronted with Turner Syndrome can be a quite a task. For the parents, as well as the patient, it raises a lot of questions and is a very emotional experience. (Future) partners can also have a lot to deal with. One way to cope with all this is to talk about it with people who have experienced the same and can answer many questions. If a group seems too big a crowd for a first encounter, then a board member is always available to meet with you on a more personal basis.
The main objective of the association is to facilitate contact between fellow-patients in a relaxed atmosphere. By exchanging experiences, breaking the social isolation and providing information, we try to offer support to Turner patients and their families.
The association is not only there for sharing problems, but also for sharing fun times: since a few years we also offer activities focused on a specific target group. We have activities for the young (at heart) who are more adventurous (youth weekend, shopping day, etc). There is also a group for adult Turner-women that organises activities more suited to their interests (city or museum visit, coffee mornings, etc).
For individual questions, you can always contact the board. There is always someone to lend an ear should you feel the need to talk.