The Inherited Shame: Finding out about disease (video!)

We are proud to launch Part I in our interview series with the Norwegian author Thorvald Steen! In Part I of “The Inherited Shame”, the author talks about when he first found out about having inherited a genetic disease: Facioscapulohumeral. Thorvald Steen was born in 1954, in Oslo, Norway. He grew up with his mother […]

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, […]

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, […]

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 […]

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 […]

Moving Forward – A new project

We have just launched a project called “Moving Forward” where we aim to mobilise people at risk or presymptomatic to become more involved in Huntington research. Moving Forward was launched by the European Huntington Association a few weeks ago. The project aims at mobilising people at risk for Huntington’s disease and people who are presymptomatic in […]

PTC Therapeutics has started in-human Huntington’s disease trial

Two days ago, PTC Therapeutics announced that the drug candidate PTC518 has entered into a “Phase 1 Clinical Trial”. The initial results are expected in the first half of 2021.  PTC518 is an orally bioavailable molecule. In other words, the drug candidate is administered in the form of a pill taken through the mouth.  In […]

VIRTUAL ROUNDTABLE: Discuss how to ensure better access to care!

You are invited to discuss how to ensure better access to care, services and treatment for all patients affected by Huntington’s Disease and other Rare Neurological Diseases. Join us for the multi-stakeholder Virtual Roundtable on Thursday 3. December 2020! The roundtable discussion will bring together a variety of stakeholders: representatives from European Huntington’s Disease Network, […]

Huntington’s Disease Podcast

The HD Insights Podcast by the Huntington Study Group is an interview series with the people working in Huntington’s disease research and treatments.  The Huntington Study Group is a non-profit research organisation formed in 1993 – the same year as the Huntington’s disease (HD) gene was discovered.  Learn more: The Insight Podcast The group is dedicated […]