Author: Maiken Arnesen

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…
Read more

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…
Read more

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,…
Read more

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…
Read more

LIRH Conference: Current Treatment Perspectives for Huntington Disease

The Italian League for Research on Huntington Disease (LIRH) hosted their annual conference in December 2020. Watch a recording of their online meeting below (in English) and get an introduction to ongoing and upcoming therapeutic studies in Huntington’s disease.

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…
Read more

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,…
Read more

VIRTUAL | New Year’s Eve Worldwide Wish to Cure Huntington’s

Jimmy Pollard is inviting you to join his virtual event: New Year’s Eve Worldwide Wish to Cure Huntington’s Disease! Make a wish or just listen to others from around the world.  On New Year’s Eve, 31st of December, from 20:00 to 02:00 Central European Time, you are invited to join the virtual event New Year’s Eve Worldwide Wish to Cure Huntington’s Disease on zoom! The event…
Read more

Merry Christmas!

To all of you: Merry Christmas from the European Huntington Association! This has been a strange and different year. For many of us, it has been difficult. The world we knew changed: uncertainty, social distance, lockdown, and isolation. Families were not allowed to visit loved ones in care homes, children could not go to school, meet…
Read more

The Inherited Shame: Coping with disease (video!)

In Part II of “The Inherited Shame”, Thorvald Steen talks about how to cope with having a genetic disease: how important it was to open up to close friends and how he was able to see his own strengths instead of limitations. When Thorvald Steen got diagnosed with facioscapulohumeral muscular dystrophy at the age of…
Read more