Category: News

Watch the EAN Virtual Congress! FREE

The 6th Congress of the European Academy of Neurology (EAN), and First Virtual Congress, was the biggest meeting in neurology this year with more than 40.000 online participants. You can now watch all of the sessions online for a limited time and free of charge! The Congress was planned for May in Paris. Due to COVID-19,…
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Join Interesting Webinars!

Throughout the year, the European Reference Network on Rare Neurological Diseases (ERN-RND) provides educational webinars on rare diseases – free and open to everyone. The webinars are a collaboration between ERN-RND and the European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) and the European Academy of Neurology (EAN). The webinars will treat topics related to rare diseases and include…
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The first Huntington patients ever have received gene therapy!

The first two patients in uniQure’s in-human gene therapy trial for Huntington’s disease (HD) have now been treated. The dosing of the drug called AMT-130 in the trial marks a significant milestone for uniQure and for Huntington patients in need of treatment options. At this stage, safety, tolerance and efficacy of the treatment are being tested. 26…
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eHealth project granted €3,000!

Two days ago, the European Huntington Association was granted €3,000 from European Federation of Neurological Associations and their #BrainLifeGoals Project! The money will be used to develop HealthE-RND, an online platform to ensure access to support throughout Europe. In addition, the project is funded by the EU Joint Programme – Neurodegenerative Disease Research. The project aims to:  1) Develop…
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Is the COVID-19 pandemic affecting tominersen studies?

Generation HD1 Roche would like to reassure you that tominersen studies are ongoing at clinical trial sites around the world, where local guidance allows. The GENERATION HD1 trial is continuing, in collaboration with study participants, clinical trial investigators and health authorities, while also ensuring patient safety and data integrity throughout the studies given the ongoing…
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Pridopidine and Michael Hayden makes comeback!

Since Dr. Michael Hayden left his previous job in Teva Pharmaceutical Industries, he has wanted to finalize the project Teva decided to terminate late 2017 – the Pridopidine clinical trial.  In the last couple of years Dr Hayden has established the company Prilena and taken over the rights to Pridopidine.  Yesterday Prilenia announced that they…
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1.000 KM for Huntington’s Disease

Two years ago, Jeroen De Schepper cycled 10.000 km for Huntington’s Disease. He then helped arrange ‘HD on the BIKE’ in Belgium together with the European Huntington Association. During Awareness Month, he will cycle 1.000 km to raise awareness.  Picture: Jeroen De Schepper to the left. – What is your connection to ‘HD on the…
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North Star – HD8890: THE STORY BEHIND

Olivia Sawano is the person behind the Huntington song “North Star – HD8890”. Throughout May, she has decided to donate the profits from the song to the European Huntington Association. Read an interview with the talented musician here.  Photo: One of the last photos taken of Olivia together with her father. – How did you get…
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Huntington’s disease and the COVID-19 pandemic – a difficult combination

On monday, the 6th of April, 2020, The European Huntington Association (EHA) and the European Reference Network for Rare Neurological Diseases  (ERN-RND) arranged an open webinar titled “Huntington´s Disease and the COVID-19 Pandemic – a difficult situation”   The organisers of the webinar acknowledges that COVID-19 – with all the restrictions it has, can cause a lot of…
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Webinar: Huntington’s disease and COVID-19 – a difficult combination

We understand that the COVID-19 pandemic can cause a lot of strain, stress and isolation on Huntington’s disease (HD) families, patients and relatives. All the restrictions imply big changes in daily life and the routines are hard to maintain. We hear that families struggle, feel scared and isolated. In order to support you in this…
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