Bright Lights Big City: HD-COPE descends upon New York City
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 […]
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 […]
HD on the Bike 2019
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 […]
Business Meeting in Vienna – Video!
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.
Two important meetings in Vienna
[vc_row][vc_column][vc_column_text]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 […]
Race for awareness – video!
[vc_row][vc_column][vc_column_text]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 […]
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 […]
You are invited to Vienna!
In September the European Huntington Association is arranging their Business Meeting in Vienna. This year the association wants to encourage as many family members as possible to participate. REGISTER HERE The EHA Business Meeting is taking place one day prior to the EHDN Plenary Meeting. The Business Meeting will happen 13 September and the EHDN […]
May is Huntington Disease Awareness Month
[vc_row][vc_column][vc_column_text]Over the last years, May have been Huntington Disease Awareness Month. Thanks to the Huntington Society of Canada buildings, monuments and statues has been lit up in blue and purple to raise awareness for Juvenile HD (in purple) and HD (in blue). Light up your home and share your photos on social media using #LightItUp4HD. […]
Join us – HD on the Bike
[vc_row][vc_column][vc_column_text] Join us in creating awareness! The 18th of August the European Huntington Association will bike for Huntington’s Disease. And we invite all of you to join us. Everyone can join: if you’re directly affected by the disease, if you have a friend, a husband or a wife that’s affected by the disease, if you […]