Category: Support

The Inherited Shame (Video!)

Thorvald Steen did not know he had an uncle with the same disease as him. In this interview, he talks about when he found out about having a genetic disease and how to cope. Thorvald Steen was born in 1954, in Oslo, Norway. He grew up with his mother and grandmother. He didn’t know anything…
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VIRTUAL | New Year’s Eve Worldwide Wish to Cure Huntington’s

Jimmy Pollard is inviting you to join his virtual event: New Year’s Eve Worldwide Wish to Cure Huntington’s Disease! Make a wish or just listen to others from around the world.  On New Year’s Eve, 31st of December, from 20:00 to 02:00 Central European Time, you are invited to join the virtual event New Year’s Eve Worldwide Wish to Cure Huntington’s Disease on zoom! The event…
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Merry Christmas!

To all of you: Merry Christmas from the European Huntington Association! This has been a strange and different year. For many of us, it has been difficult. The world we knew changed: uncertainty, social distance, lockdown, and isolation. Families were not allowed to visit loved ones in care homes, children could not go to school, meet…
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The Inherited Shame: Coping with disease (video!)

In Part II of “The Inherited Shame”, Thorvald Steen talks about how to cope with having a genetic disease: how important it was to open up to close friends and how he was able to see his own strengths instead of limitations. When Thorvald Steen got diagnosed with facioscapulohumeral muscular dystrophy at the age of…
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The Inherited Shame: Finding out about disease (video!)

We are proud to launch Part I in our interview series with the Norwegian author Thorvald Steen! In Part I of “The Inherited Shame”, the author talks about when he first found out about having inherited a genetic disease: Facioscapulohumeral. Thorvald Steen was born in 1954, in Oslo, Norway. He grew up with his mother…
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Free eLearning Platform for Neurology Advocates

The newly-launched platform is developed by the European Federation of Neurological Associations (EFNA). The eLearning aim to upskill neurology advocates by developing partnerships, hosting successful online events and developing social media strategies. Everyone can enroll free of charge. NEWS RELEASE 16/12/2020By European Federation of Neurological Associations (EFNA) In 2016, EFNA launched its Training Initiatives for Neurology Advocates [TINA]. As part of the initiative,…
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Adriano is walking 1000 km to raise awareness of Huntington’s Disease

Adriano Meireles is 28 years old and at risk for Huntington’s disease. To raise awareness and funds for the Portuguese association, Associação Portuguesa Dos Doentes De Huntington, he decided to walk across Portugal. – Why did you embark on this journey?  – This adventure started because I found out on the last couple of years that…
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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 – A new project

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. Moving Forward was launched by the European Huntington Association a few weeks ago. The project aims at mobilising people at risk for Huntington’s disease and people who are presymptomatic in…
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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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