Category: Support

COVID-19 Info and advice

What is COVID-19? COVID-19, short for coronavirus disease 2019, is an infection caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). SARS-CoV-2 is a newly identified pathogen that has not previously been seen in humans and is highly contagious. Though it belongs to the same category of viruses as SARS coronavirus (SARS-CoV) and influenza viruses, SARS-CoV-2 is a different…
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Excersice – At home

The European Huntington’s Disease Network are asking the HD Community to stay safe and they are sharing links to remain active while at home. Please see their message below: We strongly encourage EHDN members to follow their local institutional or governmental policy for the current COVID-19 advisory. Please ensure the safety and security of yourself, family, friends…
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Mental Health & COVID 19

How your mental health might be affected The spread of coronavirus is a new and challenging event. Some people might find it more worrying than others. Try to remember that medical, scientific and public health experts are working hard to contain the virus. Most people’s lives will change in some way over a period of…
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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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TODAY IS RARE DISEASE DAY 2020!

February 29 is a rare day – it comes only once every 1461 days – and it is dedicated to raising awareness for people living with a rare disease.  Photo: Rare Disease Day Rare Disease Day 2020 – coordinated by EURORDIS – is the thirteenth international rare disease day. Today, awareness-raising activities are taking place all…
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Meeting on how to improve care in Europe

In January, patient advocates visited the European Reference Network for Rare Neurological Diseases. During the meeting, they discussed how to provide better care and improve knowledge of rare diseases. From www.ern-rnd.eu | Meeting video below The aims of European Reference Network for Rare Neurological Diseases (ERN- RND) are to address the unmet needs of more…
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Left to right: Olca Engin-Sarialtin, Astri Arnesen, Svein Olaf Olsen.

September 13: EHA Business Meeting

The European Huntington Association (EHA) Business Meeting is held every other year and is taking place around the same time as the EHDN Plenary Meeting. This year, the Business Meeting will take place on Sunday, September 13.  The Business Meeting is going to be held in the morning, so that it will be possible to leave Bologna…
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Trial Finder Launched in Europe

This Christmas, we launched the first HD Trial Finder in Europe. HD Trial Finder is a platform developed to make it easier for you to find out more about ongoing Huntington’s disease (HD) trials and studies in Europe. Right now, Huntington’s disease trials and studies are taking place all across Europe: GENERATION HD1, ENROLL-HD, PRECISION-HD1,…
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The Huntington Challenge

November 30, the “Huntington Challenge” started. Since then, the challenge has been spread across Europe. The aim is to raise money to help Huntington’s disease care homes and families. Video below! If you follow the European Huntington Association on facebook, you have probably noticed videos appearing marked with #HuntingtonChallenge. November 30, the European Huntington Association…
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