Join the webinars held by the European Reference Network for Rare Neurological Diseases on 21 January and 18 February! The first webinar is on Immune-mediated choreas. The other on Mitochondrial disorder with chorea. Webinar 1 Date: 21 January, 15-16h CETTopic: Immune-mediated choreasSpeaker: Jan Lewerenz, University Hospital Ulm, Germany Sign up here! Webinar 2 Date: 18 February,…
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EURORDIS Black Pearl Awards is taking place on 18 February in Brussels. To purchase a ticket to attend the event contact martina.bergna@eurordis.org or watch a live stream of the Awards Ceremony via blackpearl.eurordis.org. What is Black Pearl Awards? From www.blackpearl.eurordis.org The EURORDIS Black Pearl Awards is an annual event held in Brussels to recognise the outstanding achievements and exceptional work of people…
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29 February 2020 will be the thirteenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities. Find events near you! | Get involved! Rare Disease Day takes place on the last day of February each year. The main objective of Rare…
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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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Every second year European Huntington’s Disease Network (EHDN) hosts one of the world’s largest conferences dedicated solely to Huntington’s disease. In 2020, the EHDN Plenary Meeting will take place in Bologna, Italy September 10-12. Usually, EHDN members are entitled to have their travel and accommodation costs reimbursed up to a maximum of 400 EUR for travels within…
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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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