Category: Trial Updates

More positive data from the Ionis/Roche trial released today

Today Ionis and Roche have announced more details from the Huntingtin lowering trial.  The initial results was released in December last year and today at the CHDI conference in Palm Springs, more details from the trial results was presented.  The drug formely called IONIS-HTTRx  will from now on be named RG6042.  The drug was given…
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Meeting with Roche

When the groundbreaking results of the Huntingtin lowering trial, IONIS-HTTRx, was announced the European Huntington Association travelled to Basel to meet Roche Pharmaceuticals. Roche have taken over the trial and is now planning the next step. Roche have put together their own team of around 20 people that are working on the Huntingtin lowering trial.…
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Christmas card from Roche

This December IONIS Pharmaceuticals announced their groundbreaking results from the first Huntingtin lowering trial in humans (called IONIS-HTTRx). At the same time it was announced that Roche was going to take over the trial. Here is a message from their team: Dear members of the Huntington’s Community, We are delighted that IONIS-HTTRx is entering the…
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Groundbreaking results!

This date will probably go into history along with the discovery of the Huntington gene in 1993. Today IONIS Pharmaceuticals announced the results from the first Huntingtin lowering trial in humans. The result exceeds all expectations. “I almost cried when I got the results,” Astri Arnesen the President of EHA, states. Best Christimas Gift ever…
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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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The World Orphan Drug Conference in Brussels

It was 300 attendees at the World Orphan Drug Conference in Brussels from the 16th to 17th of November. Among them was the European Huntington Association’s President Astri Arnesen, the Board Members Svein Olaf Olsen and Bea De Schepper.

Newsletter from the European Huntington’s Disease Network

The European Huntington’s Disease Network (EHDN) is a nonprofit research network. EHDN forms a collaborative platform of scientists, clinicians, Huntington’s disease (HD) patients and families. The network aims to improve clinical care in HD, advance research, make clinical trials better and easier to conduct. Here is the EHDN November 2016 newsletter.   Here is the newsletter’s…
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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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Promising research from CHDI’s 2016 Conference – subtiteled in many languages!

In this video 'Postcard from Palm Springs 2016', HD family advocate and former NBC reporter Charles Sabine presents highlights from CHDI's 11th Annual Disease Therapeautics Conference, a Forum for Drug Discovery and Development which ran from February 22nd to 25th this year in Palm Springs California. The message is overwhelmingly positive; a 'new age of…
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