Category: News

The DOMINO-HD study: What is it and why are we doing it?

DOMINO-HD is a European study funded by the EU Joint Programme for Neurodegenerative Disease. The aim of the study is to investigate the relationship between genetic and lifestyle factors and Huntington’s disease symptom progression. Written by Dr. Cheney Drew Research has shown that the rate of decline in people with Huntington’s disease (HD) can be…
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Moving Forward: Towards a Future with Effective Treatment for Huntington’s Disease

We are launching “Moving Forward”. The new project aims at including people from Huntington’s disease families in drug development by facilitating an active and long-lasting commitment from patients and family members. Written by Filipa Júlio, Project Manager in Moving Forward Between September 2016 and December 2019, the European Huntington Association (EHA) has run multiple European and…
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Novartis plans to start in-human Huntington’s disease trial in 2021

The Swiss pharmaceutical company Novartis is currently developing a pill for Huntington’s disease. Two days ago, the US Food and Drug Administration, FDA, granted an Orphan Drug Designation for the drug.  The drug is called branaplam (LMI070) and is administered in the form of a pill that you take through your mouth.  At the moment,…
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Two new participants have enrolled in gene therapy trial

In June, two people enrolled in the first gene therapy trial for Huntington’s disease. Now, two more participants have joined the study uniQure states in a new press release.  UniQure is currently developing a gene therapy for Huntington’s disease. The drug candidate is called AMT-130 and is a gene therapy. In other words, it seeks to…
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How to Ensure Equal Access to Treatment

The HEATED Project’s main aim is to ensure equal access to Huntington’s disease drugs by identifying barriers and overcoming them. The task force is therefore calling for more people to get involved.  The HEATED Project is a task force under European Huntington’s Disease Network (EHDN). Their main objective is to ensure equal access to drugs…
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Oral Care & Huntington’s: Keeping the mouth healthy

Initiated by the Huntington’s Disease Association of Cyprus, dental hygienist and newly elected chairperson of the Swedish Huntington Association, Annette Carlsson, held a webinar on oral care and Huntington’s disease 8th of October. Resources below! More than sixty people attended the webinar to learn more about oral care in people with Huntington’s disease.  Among the…
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WEBINARS

Did you miss any of our live webinars? Find more information and recordings below: Oral Care & Huntington’s: Keeping the mouth healthy 8 October | 11:00-12:30 Central European TimeMore information Family Involvement in Drug Development: Where are we now? 14 October | 19:00-20:30 Central European TimeRECORDED WEBINARMore information Running an Association During a Pandemic 21 October | 19:00-20:30 Central European TimeRECORDED WEBINARMore…
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How many people have Huntington’s Disease?

Actually, nobody can give a well documented answer to this question.  The estimates of how many Huntington’s disease patients there are vary a lot and we actually don’t have any precise mapping of the numbers. But does that matter?  Written by Astri Arnesen Hugh Rickards, psychiatrist and Huntington’s disease (HD) specialist, argues that we should get better…
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Good to Live – Russian “school” for Huntington’s disease families

In August, two Huntington’s disease meetings took place in Russia. During the meetings, Huntington families learned more about the disease, treatment and care. In Russia, the Huntington’s disease association Orphan People have teamed up with health care workers and scientists and established “Good to Live”. The initiative is a “school of health” for Russian Huntington’s disease families. …
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First Huntington Meeting in Iceland

Friday, 18 September, the first ever Huntington meeting will take place in Iceland. The meeting can be attended both online and in person, and it is open to everyone who understands Icelandic. Here is an interview with the woman behind the meeting: – To start off: What is your name and what is your role in this meeting? Vigdis Stefansdottir. I am a genetic…
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