Category: News

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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EHDN Bridging Event: – It’s a really rich time for us to be involved in Huntington’s disease

At the moment, there is a lot of research being done in the Huntington’s disease field. As Sarah Tabrizi from University College London stated during the meeting: ­– It’s a really rich time for us to be involved in Huntington’s disease. Get an update on some of the trials and studies here! Find all the…
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Harry needs a hug: A story for children learning to deal with Huntington’s Disease

The brand new book Harry needs a hug helps children to understand how to deal with Huntington’s disease. The book is presented in an informative, sensitive and easy to understand way. The aim of Harry needs a hug is to help children understand what living in a family affected by Huntington’s disease means. The blurb of…
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Targeting Unstable Genes

Due to instability in the gene, Huntington’s disease symptoms may begin earlier in life. By targeting proteins involved in DNA damage repair, we might be able to reduce the levels of instability and delay disease progression. Many repair proteins work to maintain the machinery that copies DNA.  One of these proteins – so-called Huntington’s disease…
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EHDN Newsletter: A special pandemic issue

The European Huntington’s Disease Network (EHDN) Newsletter appears three times a year. This year’s second edition is dedicated to the impact of Covid-19: the problems it has created but also the adaptability and the positive trends. In the newsletter, you can learn more about telemedicine. Here, Alzbeta Mühlbäck, our own doctor, states: – Though we…
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