Category: News

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 with a fancy name: MutS Homolog 3 (MSH3). This protein…
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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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Adriano is walking 1000 km to raise awareness of Huntington’s Disease

Adriano Meireles is 28 years old and at risk for Huntington’s disease. To raise awareness and funds for the Portuguese association, Associação Portuguesa Dos Doentes De Huntington, he decided to walk across Portugal. – Why did you embark on this journey?  – This adventure started because I found out on the last couple of years that…
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Are you our new Web Editor?

Our longtime web editor is leaving us for new challenges. Now we are looking for someone who has personal experience with Huntington’s disease, can fill this position and work half time or more.  This job consists of two main parts: 1) Administering our website ( in addition to other channels (such as social media), and 2) Produce…
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