You are invited to discuss how to ensure better access to care, services and treatment for all patients affected by Huntington’s Disease and other Rare Neurological Diseases. Join us for the multi-stakeholder Virtual Roundtable on Thursday 3. December 2020! The roundtable discussion will bring together a variety of stakeholders: representatives from European Huntington’s Disease Network,…
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Initiated by the Huntington’s Disease Association of Cyprus, dental hygienist and newly elected chairperson of the Swedish Huntington Association, Annette Carlsson, held a webinar on oral care and Huntington’s disease 8th of October. Resources below! More than sixty people attended the webinar to learn more about oral care in people with Huntington’s disease. Among the…
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Did you miss any of our live webinars? Find more information and recordings below: Oral Care & Huntington’s: Keeping the mouth healthy 8 October | 11:00-12:30 Central European TimeMore information Family Involvement in Drug Development: Where are we now? 14 October | 19:00-20:30 Central European TimeRECORDED WEBINARMore information Running an Association During a Pandemic 21 October | 19:00-20:30 Central European TimeRECORDED WEBINARMore…
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In August, two Huntington’s disease meetings took place in Russia. During the meetings, Huntington families learned more about the disease, treatment and care. In Russia, the Huntington’s disease association Orphan People have teamed up with health care workers and scientists and established “Good to Live”. The initiative is a “school of health” for Russian Huntington’s disease families. …
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Friday, 18 September, the first ever Huntington meeting will take place in Iceland. The meeting can be attended both online and in person, and it is open to everyone who understands Icelandic. Here is an interview with the woman behind the meeting: – To start off: What is your name and what is your role in this meeting? Vigdis Stefansdottir. I am a genetic…
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At the moment, there is a lot of research being done in the Huntington’s disease field. As Sarah Tabrizi from University College London stated during the meeting: – It’s a really rich time for us to be involved in Huntington’s disease. Get an update on some of the trials and studies here! Find all the…
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On Tuesday 25 August, Wave Life Sciences is organising a webcast where they are planning to share exciting updates on their platform. In a recent press release, the company also announced that the results of their huntingtin lowering trials are expected in the first quarter of 2021. 10 August 2020, Wave Life Sciences issued a…
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September 11 from 14:00 – 18:00 CEST, the European Huntington’s Disease Network will host Virtual Bridging Event where you can learn more about Huntington’s disease research and trials. Sign up now! Every other year, the European Huntington’s Disease Network (EHDN) hosts one of the world’s largest conferences dedicated solely to Huntington’s disease (HD). Despite taking a different form…
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The 6th Congress of the European Academy of Neurology (EAN), and First Virtual Congress, was the biggest meeting in neurology this year with more than 40.000 online participants. You can now watch all of the sessions online for a limited time and free of charge! The Congress was planned for May in Paris. Due to COVID-19,…
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Throughout the year, the European Reference Network on Rare Neurological Diseases (ERN-RND) provides educational webinars on rare diseases – free and open to everyone. The webinars are a collaboration between ERN-RND and the European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) and the European Academy of Neurology (EAN). The webinars will treat topics related to rare diseases and include…
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