Author: Maiken Arnesen

Conference in North Staffordshire

This year a Huntington’s Disease conference will once again be held in North Staffordshire, Stoke on Trent. Among many brilliant speakers, our own board member Dina de Sousa, will speak at the conference. Do you want to participate? Register here. Here’s a description of the event: Families and care providers continue to face the challenges of…
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Updates from an exciting conference!

24th of April marked the opening of the 12th CHDI conference in Malta. 27th marked the end. What have we learned? HDBuzz has made a day-by-day summary of the conference. You can find it below or go to their website.   The aim of the CHDI conference was to learn and discuss where to go from the place we are…
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huntingtons disease trial

What is this new Huntington’s disease drug?

A scientific paper declared a while ago positive results for a trial of the drug deutetrabenazine in Huntington’s disease. The trial studied a new way of treating uncontrollable movements in HD. Now the drug is approved for treatment in the US and is launched as Austedo. Confusing stuff! Read more: New HD drug approved What’s chorea?…
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CHDI: searching for a treatment in Malta

24th of April marked the opening of the 12th CHDI conference in Malta. The aim of the meeting is to learn and discuss where to go from the place we are now to the goal destination: a treatment for Huntington’s disease (HD). Present at the meeting is EHA President Astri Arnesen and board member Svein…
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Video interview: Living with HD

Alice Rivières is French. She is kind, well-spoken and optimistic. And she has a family history with Huntington’s disease (HD). Hear her strong testimony. Alices’ mother got sick 20 years ago. Ten years later she decided to get tested. It felt like a part of her just needed to know: needed to be certain to be…
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Reflecting on HD as a rare disease – and why Enroll-HD is so important

February 28 was the  Rare Disease Day – the day of international recognition for the myriad of little known but devastating diseases that can affect us as humans. The message is awareness. Awareness for the existence and struggles of those afflicted. Written by Chris De Sousa Rare diseases are rarer when less people know about…
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EHA Conference in Sofia – prices from 270 EUR!

The 22-24th of September 2017 the European Huntington Association (EHA) is arranging a conference in Sofia, Bulgaria. It aims to give information about Huntington’s disease (HD) and is open to all our friends and members – to professionals and family members impacted by HD.  Our speakers will look at a lot of interesting and important topics. During…
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Launching of Our Voice

This autumn the EHA decided to create a new section at our website. It’s called Our Voice and it is dedicated to Huntington’s Disease stories that we carry with us. Our Voice contains video interviews with professionals and people directly affected by HD.

Living with Huntington’s Disease

In November the European Huntington Association (EHA) met two strong women in Oslo, Norway. We interviewed them to hear their side of the story: how is it really to live with Huntington’s Disease (HD)? Watch their answers in the video below.  Angela is 25 years old. She got diagnosed in the summer of 2016, but…
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Collaboration between EHA and EHDN

The 1st of December a meeting took place between EHA and EHDN. The two organizations discussed how they could extend their collaboration and work coordinated with the project Stronger Together.