In an effort to bring light and hope into the lives of those affected by rare diseases, an innovative project has taken root in the heart of the Brazilian Jiu-Jitsu (BJJ) community in Romania. Under the motto “Rolling for Rare,” this project was initiated by the Children’s Joy Association for Dystonia together with the Iguana…
Voices from the community – the Dystonia Matters Podcast
In 2020, Dystonia UK launched the Dystonia Matters podcast as a powerful platform to give our community a voice. The podcast series allows us to share the stories of people living with dystonia, whether they’ve been diagnosed themselves, or care for someone with the condition. Our hope is that through telling the tales of our…
Meet Line from Norway
My story started the summer of 2009, with much discomfort in my eyes. January 2010 I had to stop working and was on sick leave due to extreme sensitivity to light and headaches. I was burned out. I was examined for Sjögren’s disease, infection and different illnesses of the eyes without any results. My eyes…
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. https://www.ern-rnd.eu/disease-knowledge-hub/dystonia/ We hope that this patient experience map will support patients who are newly diagnosed as well as other dystonia patients and…
JUST PUBLISHED: The Third New Edition of The Manual of Botulinum Toxin Therapy
The year 2024 begins with a new book: The Manual of Botulinum Toxin Therapy, one of the best-selling botulinum toxin books, has now been published in its third new edition by Cambridge University Press. ‘We are delighted that this book has been able to establish itself over the years as the standard work on…
