Czech Republic

Dystonie-rodina spolu, z.s. 

Chairwoman: Bc. Jana Vičarová
Contact person: Bc. Jana Vičarová
Address: Baráčnická 809/3
400 01 Ústí nad Labem
Czech Republic

E-mail: dystonia@dystonia.cz
jana.vičarová@dystonia.cz
Phone: +420604545814
Facebook: Dystonie Podpora
Website: www.dystonia.cz

Dystonie Family Together z.s. (Rodina spolu z.s.) is the only Dystonia patient organization in Czech Republic and Slovakia. It has 37 members and many supporters. Some of the members are dystonia specialists such as Professor Dr. Robert Jech and Dr. Petra Havránková. The organisation supports dystonia patients and their families. They organize meetings with patients and physicians, and support the training of medical students.
It is important to raise awareness of dystonia in the Czech Republic and Slovakia because many patients are lonely. Dystonie Family Together z.s. (Rodina spolu z.s.) will use the Jump for Dystonia campaign in these efforts.
The vision for the future is to establish local dystonia support groups in each region of Czech Republic and Slovakia. These groups can then provide information and advice for dystonia patients and their families, organize lectures, and meetings. The goal is also to cooperate with regional experts in dystonia, mainly within rehabilitation, but also with social workers. We are dedicated to early diagnosis in children who is missing the diagnosis and the parents that have sought help from us. Afte an agreement with doctors, children are examined in motion disorder clinics.