Author: Maiken Arnesen

The day Pope Francis met Huntington’s disease

The 18th of May people gathered in the Vatican. It was an event unlike any other: the largest global gathering of the Huntington’s Disease community. Twenty-six countries sat side by side: from New Zealand to Norway, from Brazil to Poland. Why? To meet one man: Pope Francis. And to tell the world that Huntington’s disease…
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New opportunities in Malta

When the Huntington’s Disease (HD) Therapeutics Conference took place in Malta late April, the European Huntington Association used the opportunity to meet two HD family members. They told us about the situation HD families in Malta faces today.  Stigma It is a small island and it is densely populated. From a population of 420.000 people…
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Find the program here!

The 22-24th of September 2017 the European Huntington Association (EHA) is holding a conference in Bulgaria. Around 250 will join us in Sofia – and we look forward to it!   You can find the program here:  Program for Sofia Conference: Stronger Together During our conference you will get the opportunity to meet representatives from the pharma…
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Spring News from the research community

Three times a year the EHDN newsletter appears. Now you can read the Spring edition – with latest news from the Huntington’s Disease (HD) research community. From page 8-10 you will find a interview with our own President, Astri Arnesen.  If you are new to the European Huntington’s Disease Network, known as EHDN, here’s a…
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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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