We understand that the COVID-19 pandemic can cause a lot of strain, stress and isolation on Huntington’s disease (HD) families, patients and relatives. All the restrictions imply big changes in daily life and the routines are hard to maintain. We hear that families struggle, feel scared and isolated. In order to support you in this…
Read more
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…
Read more
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…
Read more
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…
Read more
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…
Read more
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…
Read more
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…
Read more
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…
Read more
Join the webinars held by the European Reference Network for Rare Neurological Diseases on 21 January and 18 February! The first webinar is on Immune-mediated choreas. The other on Mitochondrial disorder with chorea. Webinar 1 Date: 21 January, 15-16h CETTopic: Immune-mediated choreasSpeaker: Jan Lewerenz, University Hospital Ulm, Germany Sign up here! Webinar 2 Date: 18 February,…
Read more
EURORDIS Black Pearl Awards is taking place on 18 February in Brussels. To purchase a ticket to attend the event contact martina.bergna@eurordis.org or watch a live stream of the Awards Ceremony via blackpearl.eurordis.org. What is Black Pearl Awards? From www.blackpearl.eurordis.org The EURORDIS Black Pearl Awards is an annual event held in Brussels to recognise the outstanding achievements and exceptional work of people…
Read more
