September 18, 2023

Cervical Dystonia Patient Journey Performance at EAN Congress

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.

A few months ago it was decided that the Cervical Dystonia and the Huntington’s Patient Journeys were going to be developed into short theatrical performances. Actress Carmel Stephens from Ireland agreed to help. Based upon the patient journeys, interviews and research on the diseases she created two scripts which she performed at the Scientific Theatre in the Exhibition Area of the congress. It was a great success and the audience of neurologists, experts and patients were moved by her performance!
Now, with ERN-RND, we are looking into how we can record these two sessions. They are about 20 minutes each and could be very valuable resources in order to inform and raise awareness of both dystonia and Huntington’s.

We thank Ern-Rnd European Reference Network for Rare Neurological Diseases for collaborating and supporting this initiativ

Monika Benson, Executive Director, Dystonia Europe