Category: News

News about the results from Generation HD1

Results from Generation HD1 As you all remember in March the independent Data Monitoring Committee advised Roche to halt dosing of the drug Tominersen.  On April 27 Scott Schobel, Medical Director & Clinical Science Leader at Roche shared the interim analyses of the results from the Generation HD1 at the CHDI therapeutics conference.  Drug effect…
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Wave Life Sciences: setback for Huntington’s disease trials

30. March 2021. Yesterday, Wave Life Sciences gave an update on PRECISION-HD1 and PRECISION-HD2. Due to disappointing results, the biotechnology company has decided to stop the two Huntington’s disease trials. However, they will continue the development of a third drug candidate.  The decision to stop the PRECISION-HD trials is not related to the stopped dosing of Tominersen…
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WEBINAR | Speak About It: How talking can be a way to cope

In this first webinar of Speak About It, Jeanne Gravfort will talk about her own method: Free Your Mind. Learn more about how talking about challenges can help you cope with Huntington’s disease. Later on, you will have the opportunity to register for a course to learn more about the approach. WEBINAR:In this first webinar the 3rd of February you will get an introduction to Free Your Mind. In this webinar you will learn more about how talking…
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WEBINAR | Improving Care for Rare Disease Patients in Europe

Rare Disease Day is taking place in February. The European Reference Network for Rare Neurological Diseases is therefore hosting a webinar on how to improve care for rare disease patients the 23rd of February. Free of charge | Open to everyone In this webinar, we will be discussing care of rare disease patients in Europe,…
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DNA Repair: Hot Topic in Huntington’s Research

DNA damage repair has become a hot topic in Huntington’s research. By targeting proteins involved in the repair process we might be able to slow down, or even prevent, Huntington’s disease. New research provide important insight on the DNA repair protein MSH3. In our body, we have a DNA repair protein: MutS Homolog 3 (MSH3). This protein is constantly scanning our…
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The Inherited Shame (Video!)

Thorvald Steen did not know he had an uncle with the same disease as him. In this interview, he talks about when he found out about having a genetic disease and how to cope. Thorvald Steen was born in 1954, in Oslo, Norway. He grew up with his mother and grandmother. He didn’t know anything…
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Simple, Brief Summary of Ongoing Drug Development

A number of researchers are using a wide range of approaches to develop new treatments for Huntington’s disease. Here is a short summary of 2020 and what to expect in 2021: After being strongly affected by Covid-19, Enroll-HD is now more or less up and running. More than 20 000 people worldwide are participating in Enroll-HD,…
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Free eLearning Platform for Neurology Advocates

The newly-launched platform is developed by the European Federation of Neurological Associations (EFNA). The eLearning aim to upskill neurology advocates by developing partnerships, hosting successful online events and developing social media strategies. Everyone can enroll free of charge. NEWS RELEASE 16/12/2020By European Federation of Neurological Associations (EFNA) In 2016, EFNA launched its Training Initiatives for Neurology Advocates [TINA]. As part of the initiative,…
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WEBINAR | Summary of the year and looking ahead

Join our last webinar in 2020! Together with Prof. Anne Rosser, Dr. Ralf Reilmann and Dr. Alzbeta Mühlbäck we will take a look at recent achievements in drug development and make some predictions for 2021! WHEN? 16. December (Today) 19:00 Central European Time20:00 Portugal, England18:00 Finland, Greece More information and registration here.

Virtual Meeting on How to Improve Access to Care for Huntington Families (Video!)

The 3rd of December representatives from different European institutions and organisations discussed how to ensure better access to care, services and treatment for all people affected by Huntington’s Disease. Together with the European Federation of Neurological Associations (EFNA) the European Huntington Association (EHA) hosted a Multi-Stakeholder Virtual Roundtable two weeks ago. The meeting was led by Donna Walsh,…
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