Author: Maiken Arnesen

First Huntington Meeting in Iceland

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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EHDN Bridging Event: – It’s a really rich time for us to be involved in Huntington’s disease

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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Harry needs a hug: A story for children learning to deal with Huntington’s Disease

The brand new book Harry needs a hug helps children to understand how to deal with Huntington’s disease. The book is presented in an informative, sensitive and easy to understand way. The aim of Harry needs a hug is to help children understand what living in a family affected by Huntington’s disease means. The blurb of…
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Targeting Unstable Genes

Due to instability in the gene, Huntington’s disease symptoms may begin earlier in life. By targeting proteins involved in DNA damage repair, we might be able to reduce the levels of instability and delay disease progression. Many repair proteins work to maintain the machinery that copies DNA.  One of these proteins – so-called Huntington’s disease…
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EHDN Newsletter: A special pandemic issue

The European Huntington’s Disease Network (EHDN) Newsletter appears three times a year. This year’s second edition is dedicated to the impact of Covid-19: the problems it has created but also the adaptability and the positive trends. In the newsletter, you can learn more about telemedicine. Here, Alzbeta Mühlbäck, our own doctor, states: – Though we…
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Update from Wave: Webcast and Ongoing Huntington’s Disease Trials

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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How COVID-19 Impact Huntington’s Disease Families

Financial concerns, pressure on family life, but also closeness to beloved ones and support. Here is how coronavirus pandemic has affected Huntington families in Italy and Scotland.  The Scottish Huntington’s Association conducted a study with 25 young people living with Huntington’s disease, while La Lega Italiana Ricerca Huntington (LIRH) studied the impact of COVID-19 on…
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Join EHDN Virtual Bridging Event!

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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Watch the EAN Virtual Congress! FREE

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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Join Interesting Webinars!

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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