Our organization was founded in the 23 of January in 2015. The main purpose of the TSA is to help girls with Turner syndrome to get an appropriate information, treatment and support they are needed. We are a very young organization. Now, after a year, we have 23 members.
A year isn’t a long time, but we have done some first steps during this time:
- we have started our facebook group (it was the very beginning of our association: https://www.facebook.com/groups/464739793609618 ),
- we have created the facebook page: https://www.facebook.com/terneriosindromoasociacija/ .
- and website of our organization: http://www.terneriosindromoasociacija.lt/
- we have participated in The conference of the rare disease in the Hospital of Lithuanian University of Health Sciences Kauno klinikos and presented Turner syndrome and our association;
- we have had a few conferences with our members during this year.
Our plans for the future include:
- working on the publications about the Turner syndrome in the public and medical magazines;
- creating the leaflets about the of TSA and the information about the Turner syndrome for the patients;
- looking for the new possibilities for the reimbursement of the medications which are needed for the treatment of Turner syndrome;
- looking for the possibilities for the collaboration with the other world-wide organizations of the rare disease.