At the beginning of July the EAN (European Academy of Neurology) 2023 Congress was held in Budapest, Hungary. DE Executive Director Monika Benson attended the event. As reported earlier Dystonia Europe has together with Ipsen and ERN-RND (European Reference Network for Rare Neurological Diseases) developed the Cervical Dystonia Patient Journey which was published in 2022….
Dystonia Video Project Update
When you are reading this we are already in the month of September and our annual Dystonia Awareness Month. From the first of September until the last day of the month there will be at least one post per day on our social media channels. As usual we will share information on the various diagnosis…
Webinar on DBS for Dystonia
Last June there was a webinar on DBS (Deep Brain Stimulation). This webinar was mainly for patients and focused on the benefits of DBS for dystonia patients that does not have sufficient effect from other treatments like for example botulinumtoxin and other medication. After Edwige Ponseel, President of Dystonia Europe opened the webinar and welcomed…
Dystonia Days Meeting
We were all looking forward to meeting in Dublin on Wednesday 31st May, after the covid pandemic prevented us from meeting for more than 2 years we have a new appreciation of meeting in person! My flight to Dublin from Newcastle, England was very short and comfortable, on arrival at Dublin airport there were no…
My Dystonia Story, Meet Raquel Vaqas
My name is Raquel, I’m Spanish but I have been living in Italy since 2005. I was diagnosed with cervical dystonia in 2013, symptoms started early 2010. I had selective denervation surgery and since then I’ve been getting botulinum toxin injections every 4 months. I wished to become a mother but I was afraid about…
