eHealth project granted €3,000!
Two days ago, the European Huntington Association was granted €3,000 from European Federation of Neurological Associations and their #BrainLifeGoals Project! The money will be used to develop HealthE-RND, an online platform to ensure access to support throughout Europe. In addition, the project is funded by the EU Joint Programme – Neurodegenerative Disease Research. The project aims to: 1) Develop […]
1.000 KM for Huntington’s Disease
Two years ago, Jeroen De Schepper cycled 10.000 km for Huntington’s Disease. He then helped arrange ‘HD on the BIKE’ in Belgium together with the European Huntington Association. During Awareness Month, he will cycle 1.000 km to raise awareness. Picture: Jeroen De Schepper to the left. – What is your connection to ‘HD on the […]
North Star – HD8890: THE STORY BEHIND
Olivia Sawano is the person behind the Huntington song “North Star – HD8890”. Throughout May, she has decided to donate the profits from the song to the European Huntington Association. Read an interview with the talented musician here. Photo: One of the last photos taken of Olivia together with her father. – How did you get […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]