According to the European Brain Council, there are more than 500,000 people living with dystonia across Europe, 100,000 of whom are estimated to live in the UK. While much of our work is centred around the dystonia community here in the UK, Dystonia UK has plenty of resources easily accessible for those across Europe and…
Finnish Dystonia Association Spring Meeting in Wintery Joensuu
People from the left: Board members Martti Ketonen and Leea Sihvo-Rajala, local volunteers Paula Hiltunen and Tuula Hirvonen (in front), board member Paula Happonen, and president Jukka Sillanpää, secretary Taina Lehtinen, and local volunteers Jaana Vainio and Aarno Komu. Photo: Tytti Svetloff, Finnish Parkinson’s Association After two years with restrictions to assemble due to COVID-19 pandemic,…
30th Anniversary of the Danish Dystonia Association
Turning 30 always requires a lot of support. The entertainer Hans Pilgaard helped the Danish Dystonia Association on its way, both with the funny and the more thoughtful. After an extremely successful AGM, it was time for a well-deserved break with coffee and side dishes. The next item on today’s program was a lecture with…
Children’s Joy Rare Disease Day
Rare Diseases Day was observed in Timisoara, Romania during the art exhibition’s 4th edition “Look at me from the inside” which is a continuation of the exhibition’s 3rd edition “Captive in my body”. This art exhibition reflects rare diseases including some forms of dystonia. The purpose of this exhibition is to draw attention to the…
Meet Jan from England: My Journey with Dystonia
I first noticed a problem with my neck, seventeen years ago at the age of 43. The main difficulty was trying to turn my neck especially when crossing a road. The situation worsened very quickly in that my neck was turning to the right. At the time I was working as a financial adviser…
