November 30, the “Huntington Challenge” started. Since then, the challenge has been spread across Europe. The aim is to raise money to help Huntington’s disease care homes and families. Video below! If you follow the European Huntington Association on facebook, you have probably noticed videos appearing marked with #HuntingtonChallenge. November 30, the European Huntington Association…
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October 4-6, the European Huntington Association conference was held in Bucharest. 220 professionals and family members were gathered in Romania to meet others and to learn more about Huntington’s disease. Over the weekend, more than 30 sessions and workshops took place at the Ramada Bucharest Convention Center. In addition, there were important meetings taking place…
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It was summer 2017 when I stumbled on the webpage of the European Huntington Association. At that time I was taking my first steps in the Huntington world. Having tested positive for the gene a few years earlier, I was now longing to be part of a community. Written by Rob Haselberg, first published in…
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Do you have a good idea? Have you conducted interesting research? Or learned anything meaningful through your work? We want to know about it! Bring your poster to EHA Conference 2019! How? 1) Write a short description of your poster and send it to info@eurohuntington.org.2) Print your poster and bring it to our conference in…
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Do you have a camera? Or maybe a friend that has one? Take part in our photo exhibition during our conference! We want people to see the many faces of Huntington’s disease! Everyone that’s affected by Huntington’s disease can participate: If you are a family member of someone with the disease, if you are affected…
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Have you heard about our conference but not yet decided if you want to go? Cristina Ferreira went all by her self from Portugal to Bulgaria to join us in 2017. Read her story: I come from a Portuguese Huntington’s disease family. My mother was diagnosed with Huntington’s in 2012. At this point she was already…
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Over the last years, May has been Huntington Disease Awareness Month. Starting off at the Huntington’s Society of Canada, Awareness Month and the #LightItUp4HD campaign has grown into a global movement. During May, buildings, monuments and statues worldwide will be lit up in blue and purple. Blue to raise awareness of Huntington’s disease, purple of Juvenile…
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The HD-COPE committee held its second annual meeting in the Big Apple, February 21-24, 2019. This year the committee welcomed members from Africa, Australia, China and South America. Now making it an international power house in the HD community. Written by Dina de Sousa, member of HD-COPE HD-COPE, the Huntington’s Disease Coalition for Patient Engagement, was…
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Today is the twelfth international Rare Disease Day coordinated by EURORDIS. This year’s theme is ‘Bridging health and social care’. From rarediseaseday.org: “According to the first ever Europe-wide survey on juggling care and daily life with a rare disease carried out by Rare Barometer, 8 in 10 patients have difficulties completing basic daily tasks. Communication…
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We will participate with our own team ‘HD on the Bike‘ at the bicycle race ŠKODA Velotour 1st of May 2019. We hope you will join us! Last year we managed to gather 40 bikers in Liège, Belgium. This year we want to be even more! We guarantee that it will be a lot of…
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