Category: Support

One year anniversary!

One year ago Alzbeta Mühlbäck and the European Huntington Association established Ask the Doctor. Since then people have been asking questions about Huntington’s disease from all over the world. The idea behind Ask the Doctor was to provide a low threshold platform where questions related to Huntington’s Disease (HD) could be asked. Over the last…
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A promising future for Malta

The circumstances for people affected by Huntington’s in Malta are poor. However, the situation might change. This October EHAs Vice President Barbara D’Alessio and LIRHs Founding Director Ferdinando Squitieri are travelling to the small country to meet HD affected families. With a population of just 420 000 Malta is one of the smallest and most densely…
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A new coalition to give families a impactful voice

The European Huntington Association (EHA), Huntington’s Disease Society of America (HDSA) and Huntington Society of Canada (HSC) are proud to announce the formation of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE), a new global coalition to give families who are affected by Huntington disease (HD) a direct and impactful voice in HD clinical research.…
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What do we really want to know?

This spring German scientists wanted to find out how much people liked to know about their future. They also wanted to find out if there were any difference between future positive and negative events. With genetic testing becoming more and more available, this is a highly relevant question. Positive and negative events The same questions…
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Is everyone gone for the summer?

It is summer and all of a sudden it feels like the whole world stops for a second. It is like everything and everyone becomes quiet, looks around, drops what they got in their hands and says: “I’m going on a vacation”. Written by Maiken Arnesen Don’t get me wrong – I love the summer…
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Want to learn more about HD?

The Scottish Huntington`s Association in Collaboration With Stirling University are offering a webbased course in HD:  Huntington`s Disease; an enabling approach to supporting families.  You find more information about the wonderful opportunity here.

Launching of Our Voice

This autumn the EHA decided to create a new section at our website. It’s called Our Voice and it is dedicated to Huntington’s Disease stories that we carry with us. Our Voice contains video interviews with professionals and people directly affected by HD.

Living with Huntington’s Disease

In November the European Huntington Association (EHA) met two strong women in Oslo, Norway. We interviewed them to hear their side of the story: how is it really to live with Huntington’s Disease (HD)? Watch their answers in the video below.  Angela is 25 years old. She got diagnosed in the summer of 2016, but…
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Any questions about HD? Ask the Doctor

Do you have any questions about Huntington’s disease (HD)? Do not hesitate to ask our doctor, Alzbeta Mühlbäck, using the contact form below HD is a disease that can be quite complicated and sometimes people are left with a lot of questions:“How does it work biologically? What kind of symptoms is normal? My father is…
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Caregivers of Huntington’s Patients Voice Frustrations with Doctors and Health System

Over on  Magdalena Kegelby reports that caregivers of  people with Huntington’s disease describe themselves as invisible patients in a healthcare system they are profoundly disappointed with, according to a study in the journal Psychiatra Polska. While the study was done in Poland, similar findings in both the U.S. and U.K. indicate that changes in medical…
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