From left: Leonardo on the rope and Giorgio on the bicycle. During the month of March in our social media we have launched the project “ Le DIstoniadi – anche il tuo passo conta” which means “ DystOlympic games – your step counts too”. We asked our followers to send us videos and photos of…
First Italian Dystonia Day
On September 26th A.R.D. (Associazione per la Ricerca sulla Distonia) organized the first Italian Dystonia Day. At the end of last year we had the idea of creating this day and began to draft some concepts. However, in March we realised that due to the Covid-19 pandemic we were compelled to change our plans. Eventually,…
United Kingdom – Dystonia Awareness Month September 2020 Action for Dystonia, Diagnosis, Education and Research (A.D.D.E.R.)
A.D.D.E.R. is a dystonia charity based in the North East of England and we have been supporting people with dystonia for 20 years. We are a small charity in that our committee is made up of only 7 volunteers, 6 of us have dystonia in various forms and all 7 of us give our time…
Norway – Contact Person Training in Bergen Norway by NDF
The Norwegian Dystonia Organisation (NDF) held a training class for contact persons last October in Bergen, Norway. On the webpage NDF have listed contact persons from within the organisation who can be contacted about dystonia. It is important that all contact persons make it clear that they are not medically trained. A contact person is…
Dystonia UK Digital Conference
On 25 – 26th September, Dystonia UK held a digital Conference «Dystonia Matters Digital». There were morning and afternoon sessions on both days, with patient speakers and expert speakers from the medical field of dystonia. It started with pre-recorded sessions on the 25th of September, and after the sessions it was Q&A (Questions and Answers)…
