Category: Support

Join Interesting Webinars!

Throughout the year, the European Reference Network on Rare Neurological Diseases (ERN-RND) provides educational webinars on rare diseases – free and open to everyone. The webinars are a collaboration between ERN-RND and the European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) and the European Academy of Neurology (EAN). The webinars will treat topics related to rare diseases and include…
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What does COVID-19 mean for Huntington’s disease families and HD research?

What does COVID-19 mean for Huntington’s disease families and HD research? From: HDbuzz COVID-19, short for coronavirus disease 2019, has taken the world by storm in almost every sense – many people have been infected with the SARS-CoV-2 virus, it’s created shopping pandemonium in stores, and many people are isolated at home. But behind that…
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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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