Author: Claudia Azañedo

HELP US MAP HD PATIENTS AND FAMILIES ACCESS TO SUPPORT AND CARE

We know that many HD families and patients are struggling to get the care and support they need. But we don’t know where the gaps are. How is this for you? Do you get what you need and is it easy to access? The European Huntington Association (EHA) has been working on an online survey…
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The European Huntington Association is devasted by the Russian attack on Ukraine

The European Huntington Association is devasted by the Russian attack on Ukraine and all suffering this brings to people. The HD community is known for it’s warm and inclusive heart and we want the Ukrainians to know we are here and can help guide them to get in touch with experts if they suffer from…
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First European HD patients has been dosed with Uniqure’s gene therapy 

First week of February another exciting step in HD research was taken, as the first two European patients were given Uniqure’s gene therapy in the ongoing Phase I/II trial.  The drug is named AMT-130.   Uniqure started the trial in the United States last year and is happy to be able to dose the first European…
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A new dawn for Tominersen

Some mornings are better than others and Tuesday January 18th was definitely one of the really good ones as I woke up to a beautiful sunrise and the news that Roche has decided to do another Phase II trial with Tominersen.  The decision is based upon the analyses made from data collected in the Generation…
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Generation HD1 – what does the data tell us?

ZOOM WEBINAR: Monday January 24th , 6 pm Central European time After several months digging into all the information collected in the Generation HD1 trial Roche is ready tell us about their findings in a webinar organized by EHA in collaboration with Roche and EHDN. Lauren Boak, PhD and Peter McColgan, MD, PhD from Roche…
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A new dawn for neurological diseases on the horizon

Our voice on behalf of people with neurological diseases (ND) has been heard! EU has decided to include ND on the list of health care priorities. This paves the way for a better future also for Huntington patients. For many years the public health priorities have primarily been focusing on cancer, cardiovascular and diabetes.  The…
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Consortium meeting in Prague October 1st 2021

1st of October the Healthe-rnd consortium was finally able to meet again face-to-face in Prague.  Most of the partners were able to attend despite the ongoing restrictions due to the pandemic.  The ones who couldn’t make it to Prague attended on Zoom. It was great to see each other again and also meet new faces as…
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EHDN Virtual Conference – September 2021

EHDN Online Plenary Meeting 2021 – Having listened to the presentations about ongoing and upcoming clinical trials during the EHDN virtual conference has filled me with renewed enthusiasm and energy – Says Astri Arnesen, EHA President . We were all hit by the setbacks in Roche and Waves trials earlier this year. But during the…
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Important new findings about how the “emotional brain” is affected early in HD

An article by by Prof Åsa Petersèn and Sanaz Gabery This article is modified and translated from Lund University homepage, Agata Garpenlind. Our results demonstrate that parts of the brain that manage emotions, the so-called limbic system, is affected early in HD mutation carriers.  These changes may contribute to the development of psychiatric and cognitive symptoms. …
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Presentation of the project Moving Forward in Tomsk, Russia

Tomsk, July 10, 2021 The European Huntington Association is happy to announce the launch of the international project «Moving Forward» in Russia! The first city to present the project was Tomsk, which is situated in Syberia. 17 members of the HD families and several doctors-neurologists attended the interregional “School of Health”, organized by the center…
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