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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The 13th of September, European Huntington Association’s Business Meeting took place at the Austria Center Vienna. Around 70 people participated. Among them were many new faces.
From 13thto 16thof September, to important meetings took place in Vienna: the EHA Business Meeting and the EHDN Plenary Meeting. During the weekend EHA’s board was re-elected and over 1000 participants got updated on the latest Huntington research. Pictures below! The European Huntington Association’s Business Meeting took place at the Austria Center Vienna. Around 70…
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