May 19, 2024

Cervical Dystonia Patient Journey

The cervical dystonia patient journey was published two years ago.

Currently is is being translated into more languages. These are published on the ERN-RND (The European Reference Network for Rare Neurological Diseases) website.

We hope that this patient experience map will support patients who are newly diagnosed as well as other dystonia patients and their caregivers.  It is also an important tool for the medical profession to better understand the situation of their cervical dystonia patients.

The patient journey was last year dramatized and performed at the EAN congress in Hungary. This performance has now been adapted into a short film that soon will be released. We hope the film will help to improve awareness and understanding of dystonia, as well as supporting education and training of the medical profession.

We thank actress Carmel Stephens for her fantastic work on both the manuscript and the performance and filmmaker Andrew Keogh for producing it. Also a great thank you to ERN-RND for supporting this project.

Monika Benson