Category: News

Is the COVID-19 pandemic affecting tominersen studies?

Generation HD1 Roche would like to reassure you that tominersen studies are ongoing at clinical trial sites around the world, where local guidance allows. The GENERATION HD1 trial is continuing, in collaboration with study participants, clinical trial investigators and health authorities, while also ensuring patient safety and data integrity throughout the studies given the ongoing…
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Pridopidine and Michael Hayden makes comeback!

Since Dr. Michael Hayden left his previous job in Teva Pharmaceutical Industries, he has wanted to finalize the project Teva decided to terminate late 2017 – the Pridopidine clinical trial.  In the last couple of years Dr Hayden has established the company Prilena and taken over the rights to Pridopidine.  Yesterday Prilenia announced that they…
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1.000 KM for Huntington’s Disease

Two years ago, Jeroen De Schepper cycled 10.000 km for Huntington’s Disease. He then helped arrange ‘HD on the BIKE’ in Belgium together with the European Huntington Association. During Awareness Month, he will cycle 1.000 km to raise awareness.  Picture: Jeroen De Schepper to the left. – What is your connection to ‘HD on the…
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North Star – HD8890: THE STORY BEHIND

Olivia Sawano is the person behind the Huntington song “North Star – HD8890”. Throughout May, she has decided to donate the profits from the song to the European Huntington Association. Read an interview with the talented musician here.  Photo: One of the last photos taken of Olivia together with her father. – How did you get…
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Huntington’s disease and the COVID-19 pandemic – a difficult combination

On monday, the 6th of April, 2020, The European Huntington Association (EHA) and the European Reference Network for Rare Neurological Diseases  (ERN-RND) arranged an open webinar titled “Huntington´s Disease and the COVID-19 Pandemic – a difficult situation”   The organisers of the webinar acknowledges that COVID-19 – with all the restrictions it has, can cause a lot of…
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Webinar: Huntington’s disease and COVID-19 – a difficult combination

We understand that the COVID-19 pandemic can cause a lot of strain, stress and isolation on Huntington’s disease (HD) families, patients and relatives. All the restrictions imply big changes in daily life and the routines are hard to maintain. We hear that families struggle, feel scared and isolated. In order to support you in this…
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Staying well when social distancing

The outbreak of coronavirus disease 2019 (COVID-19) may be stressful for people. Fear and anxiety about a disease can be overwhelming and cause strong emotions in adults and children. Coping with stress will make you, the people you care about, and your community stronger. Everyone reacts differently to stressful situations.  Webinar In order to support you…
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Latest Huntington’s disease news!

The EHDN Newsletter is here! The 39th edition is dedicated to ethics in Huntington’s disease. Find it here. The European Huntington’s Disease (EHDN) newsletter aims to communicate the network’s activities and other developments of interest in the field of Huntington’s disease to the lay community, healthcare professionals and scientists. It appears three times a year (March 1, July…
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New documentary “Absolute Beginners” – watch it now!

Absolute Beginners portrait six gene positive people and their reflections on the onset of Huntington’s disease. Watch it now! Absolute Beginners is a creative documentary presented by the French Huntington association Dingdingdong and directed by Fabrizio Terranova. You can watch it with German, English, Spanish or Portuguese subtitles on their website: From dingdingdong: A film about the…
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Results of Wave’s huntingtin lowering trial explained – video!

Just before the new year, Wave Life Sciences announced that the drug in their huntingtin lowering trial, PRECISION-HD2, had successfully lowered the concentration of mutant huntingtin protein, while healthy huntingtin was left unchanged. Video below! Why is this so exciting? To put it simply: if you inherit Huntington’s disease, you have one sick gene and one healthy gene. Both genes code for a…
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