Category: News

Novartis ends the VIBRANT-HD study and will not continue the program with Branaplam

Still the study brings us some very good news as the drug did reduce the levels of mutant (sick) huntingtin in the spinal fluid collected from the participants.  This is groundbreaking achievement as the drug is administered orally (through the mouth). Nevertheless, reducing huntingtin in a safe way seems to be a challenging process.  In August…
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Are you ready for a challenge? 

We would greatly appreciate the help of the European HD community in making a joint action in the recruitment of the SOM3355 trial. Efficient and timely recruitment equals faster results. Currently in Europe the only course of treatment for chorea is Tetrabenazine which has several negative side effects and limited efficacy for most patients. SOM3355, as…
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The European Huntington Association at the Huntington Study Group Meeting in Tampa, Florida

The 29th annual meeting of the Huntington Study Group 2022 started today with two exciting clinical trial round-ups. We learnt about the clinical trial updates from PTC Therapeutics, Roche, UniQure, Wave, Annexon, Neurocrine Biosciences, Prilenia, and Sage Therapeutics. Based on robust preliminary work, these companies are developing phase II and phase III clinical trials, essentially…
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ROB HASELBERG He officially joined the European Huntington Association (EHA) Board on September 2022.  We interviewed Rob and here are some of the questions we did so you can get to know him better. Why did you decide to join the EHA Board? First of all; ever since my first EHA meeting I felt so…
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EHDN 2022 Poster Exhibition

Between the Sessions at the EHDN 2022 Conference in Bologna, we all had the opportunity to see the amazing posters designed by the different Associations, universities and professionals with very different themes around Huntington’s disease. The European Huntington Association was really impressed by the hard work of the patient organizations and had the chance to…
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The story of Oda Felicia and ‘The Huntington Chorea project’

We are delighted to introduce Oda Felicia Abdelmaguid to the community. She is a Norwegian young woman who created her own personal project called “The Huntington Chorea Project“. @odafelicia More photos in her instagram: @Odafelicia What is The Huntington Chorea Project? As you can see in the pictures on the left, it’s a visual and creative…
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Meeting with the European Reference Network for Rare Neurological Diseases (ERN-RND)

Photo of the ERN-RND October Newsletter 2022. -I have met many really hard working and dedicated people her in Tuebingen and learned more about how they already work within the network and what their ambitions and wishes for future is, says an enthusiastic Astri Arnesen, EHA president and ERN-RND patient representative. The network partners met…
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EHA Conference 2023 Belgium

SAVE THE DATES! October 19TH -22th 2023 We will provide more information soon. For now, here is our flyer:

EHDN 2022 Plenary Meeting in Bologna

EHDN 2022 Conference took place in Bologna (Italy), from September 16th to 18th. It was the first face-to-face conference since before the pandemic on 2019, a unique and memorable experience with people from all over the world. The European Huntington Association has been actively involved during the EHDN Conference, trying to capture the best moments…
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Status of VIBRANT-HD, the study of branaplam

Another set-back for HD research was announced by Novartis on August 8. The Vibrant-HD trial has stopped dosing due to the fact that some of the trial participants have exeperienced negative effects in the nerve system outside the brain. Novartis provided a community letter regarding Vibrant HD clinical trial updates. In this letter, they explained…
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