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.  […]

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 […]

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 […]

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 […]

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 […]

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, […]

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 […]

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 […]

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, […]

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, […]