The Dutch Dystonia Association was founded in 1985 and one of the fist dystonia patients groups in Europe. There are about 1200 members and around 400 donors throughout the Netherlands. Once a year we held the National dystonia day, mostly in July. In every province (12) we yearly held a (digital) fellow sufferers meeting. Our membership magazine is called ‘Tonus’. We have around 16 brochures about different aspects of dystonia. We have a professional secretary who is available 8 hours a day, 5 days a week. Each province has his own contact person for patients support.