Category: Projects

Are you our new Web Editor?

Our longtime web editor is leaving us for new challenges. Now we are looking for someone who has personal experience with Huntington’s disease, can fill this position and work half time or more.  This job consists of two main parts: 1) Administering our website (www.eurohuntington.org) in addition to other channels (such as social media), and 2) Produce…
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Moving Forward: We Want to Hear From You!

We have just launched a project called “Moving Forward” where we aim to mobilise people at risk or presymptomatic to become more involved in Huntington research. We would therefore like to hear your thoughts! Moving Forward was launched by the European Huntington Association a few weeks ago. The project aims at mobilising people at risk for…
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Latest Huntington’s disease news!

The EHDN Newsletter is here! The 39th edition is dedicated to ethics in Huntington’s disease. Find it here. The European Huntington’s Disease (EHDN) newsletter aims to communicate the network’s activities and other developments of interest in the field of Huntington’s disease to the lay community, healthcare professionals and scientists. It appears three times a year (March 1, July…
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New documentary “Absolute Beginners” – watch it now!

Absolute Beginners portrait six gene positive people and their reflections on the onset of Huntington’s disease. Watch it now! Absolute Beginners is a creative documentary presented by the French Huntington association Dingdingdong and directed by Fabrizio Terranova. You can watch it with German, English, Spanish or Portuguese subtitles on their website: From dingdingdong: A film about the…
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“RARE/D”: A NEW RARE DISEASE PODCAST

RARE/D is a new podcast series that started on December 29. On the podcast, topics such as genome editing and health care are being discussed by a multidisciplinary team. The series are now available across many platforms including iTunes and Spotify. Find the episodes here. Behind the podcast series is the the Whitworth group consisting…
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New project: e-health for Huntington’s patients and families

In order to ensure good care for Huntington patients and their families, the HEALTHE-RND project aims at developing an e-health platform. The platform will ensure access to help and information – regardless of where people live. Written by Alzbeta Mühlbäck, MD What’s it all about?  Huntington’s disease (HD) require intensive cooperation between different medical disciplines and…
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Race for awareness – video!

18th of August the cycling race Géants Des Ardennes took place in Liège, Belgium. With the help of team leader Jeroen de Schepper, the European Huntington Association participated with their own team: HD on the Bike.  Watch video below! Around 40 people had travelled to Liège from seven different countries. A group of nine people drove 16…
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Learn more about patient advocacy and how to influence!

Are you between 18 to 35, living in Europe and affected by a neurological disorder? Then you can participate in EFNA’s workshop! Register before September 21st.  Register here. The  European Federation  of  Neurological Associations  (EFNA)  is an  umbrella  group representing 20 pan-European neurology patient groups – including the European Huntington Association. There’s a consensus among EFNA’s members that…
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HD on the Bike

In the summer of 2018 the European Huntington Association wants to create awareness around Huntington’s disease. And we want to do it in a positive and fun way. We therefore invite all of you to join us in a biking race. We will participate as Huntingtonians United under the slogan HD on the Bike. And…
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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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