October 5, 2021

Survey for patients that are diagnosed with Myoclonus Dystonia that have a confirmed mutation in the SGCE gene, and their families

We have received information from ERN-RND – European Reference Network for Rare Neurological Diseases on a survey only for patients that are diagnosed with Myoclonus dystonia that have a confirmed mutation in the SGCE gene, and their families. We are very grateful if you would please share this among your members and as soon as possible,…

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September 16, 2021

MyDystonia App Ambassador Meeting

MyDystonia is an electronic diary created for people with dystonia. This diary enables patients to monitor their symptoms and how those symptoms affect daily life. Patients can share insights with their doctor to discuss how to optimize their treatment approach. After years of experience and feedback from users, app ambassadors and advisors, in May 2021…

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