Category: Support

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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VIRTUAL ROUNDTABLE: Discuss how to ensure better access to care!

You are invited to discuss how to ensure better access to care, services and treatment for all patients affected by Huntington’s Disease and other Rare Neurological Diseases. Join us for the multi-stakeholder Virtual Roundtable on Thursday 3. December 2020! The roundtable discussion will bring together a variety of stakeholders: representatives from European Huntington’s Disease Network,…
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Moving Forward: Towards a Future with Effective Treatment for Huntington’s Disease

We are launching “Moving Forward”. The new project aims at including people from Huntington’s disease families in drug development by facilitating an active and long-lasting commitment from patients and family members. Written by Filipa Júlio, Project Manager in Moving Forward Between September 2016 and December 2019, the European Huntington Association (EHA) has run multiple European and…
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How to Ensure Equal Access to Treatment

The HEATED Project’s main aim is to ensure equal access to Huntington’s disease drugs by identifying barriers and overcoming them. The task force is therefore calling for more people to get involved.  The HEATED Project is a task force under European Huntington’s Disease Network (EHDN). Their main objective is to ensure equal access to drugs…
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Oral Care & Huntington’s: Keeping the mouth healthy

Initiated by the Huntington’s Disease Association of Cyprus, dental hygienist and newly elected chairperson of the Swedish Huntington Association, Annette Carlsson, held a webinar on oral care and Huntington’s disease 8th of October. Resources below! More than sixty people attended the webinar to learn more about oral care in people with Huntington’s disease.  Among the…
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Join our webinars!

We will organise webinars every week – free of charge and open to everyone. Upcoming webinars:  TWO-PART WEBINAR | What is mindfulness and how can it help? 2 & 9 December | 19:00-20:30 Central European TimeREGISTERMore information New Year Special: Summary of the year and looking ahead 16 December | 19:00-20:30 Central European TimeREGISTERMore information   PAST WEBINARS:…
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Good to Live – Russian “school” for Huntington’s disease families

In August, two Huntington’s disease meetings took place in Russia. During the meetings, Huntington families learned more about the disease, treatment and care. In Russia, the Huntington’s disease association Orphan People have teamed up with health care workers and scientists and established “Good to Live”. The initiative is a “school of health” for Russian Huntington’s disease families. …
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First Huntington Meeting in Iceland

Friday, 18 September, the first ever Huntington meeting will take place in Iceland. The meeting can be attended both online and in person, and it is open to everyone who understands Icelandic. Here is an interview with the woman behind the meeting: – To start off: What is your name and what is your role in this meeting? Vigdis Stefansdottir. I am a genetic…
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Harry needs a hug: A story for children learning to deal with Huntington’s Disease

The brand new book Harry needs a hug helps children to understand how to deal with Huntington’s disease. The book is presented in an informative, sensitive and easy to understand way. The aim of Harry needs a hug is to help children understand what living in a family affected by Huntington’s disease means. The blurb of…
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