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The General Assembly in Timișoara: How Dystonia Europe Unites Communities and Builds Connections Organising the Dystonia Europe General Assembly in Timișoara was an extraordinary experience, filled...
View ArticleBoard Meeting and Think Tank in Paris
When my dystonia first started I found it very debilitating and would not leave the house on my own. Fast forward a few years, and lots of rounds of botulinum toxin, and here I am travelling around...
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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...
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ERN-RND Network Annual Meeting 2024
On 10 and 11 of October the Annual Meeting of the ERN-RND network took place in Ljubljana in Slovenia. About 60 experts from all over Europe had travelled to take part and 30 participants and some of...
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Passion in Motion: Supporting Rare Disease Day in Romania
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...
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