The German self-support group was founded in 1988 as the result of a scientific project on TS. It was mostly for parents of younger girls at first but has grown to off support for women with TS, partners, families, pregnant women after prenatal diagnosis and teenagers with TS. There are regional contact groups meeting from a monthly basis to four times a year. Unfortunately, to this day there are more contact groups in the western part of Germany than in the eastern part – most of you will know that the two Germanys existing before 1989 then united to one Federal Republic of Germany…
And there are the bigger events to which people come from all over Germany:
The annual meeting with an assembly of all members on Friday night, workshops and lectures on Saturday about medical and psychosocial aspects of TS and a social event on Saturday night. The subjects vary every year and can be anything from growth hormone therapy to hearing problems or self-esteem. This is were all the different groups come together and exchange experiences.
There is an annual weekend for teenage girls on which the teenage girls with TS talk about TS in an age-appropriate fashion moderated by professionals and of course do fun things together as well.
Every autumn, there is a weekend for adult women with TS on which usually three professionals hold workshops on psychosocial aspects of TS.
Special weekends for young parents are held almost annually too by now.
There is a counselling hotline answered by a psychologist who has worked with and for the society for years. It is on a voluntary basis but calls are answered within 48 hours. Call come from women with TS, parents, doctors, students, midwifes, teachers and can include a great variety of subjects from TS and school to TS and menopause.
The German Turner Society is a member of larger Societies and can profit from that. The board tries to organize the presence of the Society at medical conferences throughout Germany and international Turner-meetings like the one in Osaka as often as possible. There are special centres being established for rare diseases in Germany right now, which are important cooperation partners. Of course the Society exists long enough for a lot of personal contacts with specialists.
We offer information material for parents, girls and teenagers and a “Turner-passport” on which all relevant medical data can be noted. We offer a regular chat room, forums and once a month a chat with Angelika Bock from the counselling hotline.
Contact details for Germany (as of June 2014):
Counseling hotline sorry, but no chance in English ☹