MyDystonia is an application created by Dystonia Europe for people with dystonia to monitor their health condition and daily routines. This electronic diary documents symptoms and disease impact according to medication. This tool can be used by patients for their own records and to improve communication with the doctor during medical appointments to get better…
The Future of Healthcare in the EU – Towards more sustainable healthcare organisations
On 15-16th October, the EFNA Autumn Academy of the Training Initiatives for Neurology Advocates [TINA] took place. 30 participants from neurology patient groups from CEE countries gathered in Bucharest to discuss the future of healthcare in the EU in the context of the upcoming EU elections, as well as how patient groups can achieve better financial…
Dystonia Awareness Month 2018
Our Second Year Participating First of all a great THANK YOU to all of you who took part in our Dystonia Awareness Month on-line activities last September. The success would not have been possible without your support and help in sharing our posts, videos, quotes etc. This was the second time Dystonia Europe was taking part…
Conference for Parents & Carers of Children and Young People with Dystonia (UK)
United Kingdom: Conference for Parents & Carers of Children and Young People with Dystonia On 22nd September we were delighted to deliver our Conference for Parents and Carers of Children and Young People with Dystonia which was attended by over 100 adults and children. Carol Huntley, whose husband has dystonia, was there with her family and…
Romania – Report from a Busy Dystonia Awareness Month
The Romanian Association for patients with dystonia: Asociata Children’s Joy organized on the 8 th of September, the 6 th edition of the National Conference dedicated to patients who suffer from various types of dystonia, their families, and specialists who work in this field. The event took place during dystonia awareness month. The event included…
