Category: Research

Is everyone gone for the summer?

It is summer and all of a sudden it feels like the whole world stops for a second. It is like everything and everyone becomes quiet, looks around, drops what they got in their hands and says: “I’m going on a vacation”. Written by Maiken Arnesen Don’t get me wrong – I love the summer…
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Summer news from the HD community

Three times a year the EHDN newsletter appears. Now you can read the summer edition; with latest news from the Huntington’s Disease (HD) community!  If you are new to the European Huntington’s Disease Network, known as EHDN, it is a nonprofit research network with different aims: to advance research, facilitate clinical trials and improve clinical…
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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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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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New drug for HD approved in USA

Exciting news for the Huntington’s disease (HD) community! The USA drug regulator, the FDA, has approved a new drug in the treatment of HD. Its commercial name is Austedo, but the drug was previously known as Deutetrabenazine. It originates from Tetrabenazine which is used to treat chorea – the jerky movements – often found in HD patients.  This is…
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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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October news from the Enroll-HD community

In the Enroll-HD Newsletter of Autumn 2016 you can read current updates from the global Enroll-HD community. You will find the entire newsletter here.  In the newsletter you can read how Astri Arnesen, the president of EHA, and Svein Olaf Olsen talk openly about one of the most private decisions for HD families: being tested. They…
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Review Finds Psychiatric and Behavioral Problems in Huntington’s are often Ignored in Research

 A recent review summarizes the scientific literature on behavioral and psychiatric symptoms of Huntington’s disease, noting that plenty of research is still needed to better understand and treat such symptoms, which traditionally have taken second stage to the disease’s movement problems. The review, “Changes in mental state and behaviour in Huntington’s disease,” published in the…
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huntingtons disease trial

The PRIDE-HD trial did NOT show that Pridopidine slows the progression of Huntington’s disease

A recent press release from Teva Pharmaceuticals has the HD community excited, claiming “Pridopidine Demonstrates Slowing of Progression of Huntington Disease in PRIDE-HD Study”. What’s pridopidine, and what can we really say about HD progression in patients treated with it? A brief history of pridopidine in HD Pridopidine is a drug with a long history…
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