Category: Support

It’s Rare Disease Day!

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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The first Italian youth association established

December 1st 2018, the first Huntington association for young people in Italy was presented. Their goal is to raise awareness and enhance collaboration across borders.

The power of music therapy – Video!

For Music Therapists, Sunniva Ulstein Kayser, music is an important channel for communication. Read more about how music therapy can help in establishing and maintaining interaction with Huntington’s patients. By using Sound Beam – a music installation that transforms movement into music – Sunniva and patients at the Huntington department at NKS Olaviken is able…
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Italian Welfare Award for Huntington Onlus!

Huntington Onlus, the Italian network of Huntington Disease, was given the annual volunteer award by Lombardy Region Authorities. With more than ten million inhabitants, Lombardy is the biggest Italian region. It’s a beautiful and very dynamic area devoted to economy, agriculture and tourism. Here, the advocacy work for Huntington’s disease has a long tradition. In…
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Letter from Pavla Šašinková: Amazing donations

This summer I got an unexpected e-mail. Bea de Schepper had collected medical equipment, stored it in her house in Belgium and wanted to donate it to a Huntington’s Disease association that could make good use of it. The equipment consisted of hospital beds, wheelchairs, chairs, toilet chairs, tables, walkers, rollators, toys and dishes. With…
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How to start your own support group – video!

Huntington’s disease can be a complex disease to live with and it can be even more complicated to live as a gene carrier. In those cases, it can be of great help to talk to others in the same situation. That’s exactly what Alice Rivières and her friend thought a few years ago. Have you…
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Two important meetings in Vienna

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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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-COPE: Huge progress for patient representation

The first weekend in February was historical: it was the first meeting of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE). They learned about research and met one of the largest pharmaceutical companies in the world. Watch a video from the London meeting below! Around thirty people had gathered at the Holiday Inn Hotel in…
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