Category: News

Staying well when social distancing

The outbreak of coronavirus disease 2019 (COVID-19) may be stressful for people. Fear and anxiety about a disease can be overwhelming and cause strong emotions in adults and children. Coping with stress will make you, the people you care about, and your community stronger. Everyone reacts differently to stressful situations.  Webinar In order to support you…
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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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Results of Wave’s huntingtin lowering trial explained – video!

Just before the new year, Wave Life Sciences announced that the drug in their huntingtin lowering trial, PRECISION-HD2, had successfully lowered the concentration of mutant huntingtin protein, while healthy huntingtin was left unchanged. Video below! Why is this so exciting? To put it simply: if you inherit Huntington’s disease, you have one sick gene and one healthy gene. Both genes code for a…
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DAY 3: CHDI Therapeutics Conference

The 15th Annual Huntington’s Disease (HD) Therapeutics Conference was taking place in Palm Springs  from February 24 to 27. Here is a summary of the third day, put together by tweets from HDBuzz.  By HDBuzz and Phylis Kitema | Photo: HDBuzz Session: Huntingtin lowering The topic on the third day was Huntingtin lowering – one of the major avenues to Huntington’s…
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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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DAY 2: CHDI Therapeutics Conference

The 15th Annual Huntington’s Disease (HD) Therapeutics Conference is currently taking place in Palm Springs. Here is a summary of the second day, put together by tweets from HDBuzz.  By HDBuzz and Phylis Kitema | Photo: HDBuzz Session: Path to prevention Background: Enroll-HD, TRACK-HD & Self Enroll Enroll-HD collects data from Huntington’s disease (HD) patients whether they have symptoms…
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DAY 1: CHDI Therapeutics Conference

The 15th Annual Huntington’s Disease (HD) Therapeutics Conference is currently taking place in Palm Springs. Here is a summary of the first day, put together by tweets from HDBuzz. By HDBuzz and Phylis Kitema | Photo: HDBuzz Morning session: Genotype and Phenotype The first session at the 15th annual HD Therapeutics Conference was “Genotype and Phenotype”, where the…
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Updates from CHDI Therapeutics Conference

Photo, left to right: Svein Olaf Olsen and Astri Arnesen at the CHDI Therapeutics Conference in 2016. The 15th Annual Huntington’s Disease (HD) Therapeutics Conference was taking place in Palm Springs. Over four days, from February 24 to 27, drug development was discussed. Summary: DAY 1 | DAY 2 | DAY 3 The CHDI (Cure Huntington’s Disease Initiative) Foundation conference is a forum for drug…
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First national meeting in Spain – Video!

In the beginning of February, all of the Spanish Huntington’s disease associations were gathered in Madrid for the first time.  Video below! Spain is one of most populated countries in Europe and have 12 Huntington’s disease associations. The meeting was an important first step in establishing collaboration between them and start working together. During the…
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