This is the third year A.D.D.E.R. have designed and delivered our dystonia awareness campaign throughout the month of September. After a great deal of thought I came up with the idea of asking people to imagine what it is like to have various types of dystonia. The campaign was aimed at people who know nothing about…
NORWAY, Digital Dystonia Activities
PhD Jeanette Koht, Norway About Jeanette Koht Working with Dystonia and treatment since 2001. Adviser for Norwegian Dystonia Association (NDF) for many years Last Project together with NDF: Dystonia and physiotherapy Trained neurologist in 2006 PhD Hereditary cerebellar diseases Head of Department of Neurology Oslo University Hospital. The Norwegian Dystonia Association arranged a webinar with Jeanette Koht…
BELGIUM, Online meetings: A blessing in Disguise
COVID-19 has wreaked much havoc over the past year in Europe and beyond. For us at Dystonie.be, the Belgian association for dystonia patients, the biggest health crisis in living memory proved to be a cloud with a silver lining. Online meetings allow us to connect with members in all parts of the country. You might…
ROMANIA, Constructive Activities During a Pandemic
Catalina Crainic, President ‘Asociatia Childrens Joy’, Romania A fundraiser for genetic testing of 12 people with dystonia by The Children’s Joy Association (adults and children). Diagnosis and classification of dystonia is of great importance for the proper management of prognostic information and genetic counselling of patients. The cost of a test is $250. Genetic testing…
UK, Reach Out, Reach All
In October 2020, we were awarded a grant by the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund. Thanks to this funding, we have been able to further grow our ‘Reach Out, Reach All’ campaign and bring the dystonia community closer together, despite the challenges of the pandemic. We brought you a…
