Et lidenskapelig team og partnere
Moving Forward, et prosjekt utført av European Huntington Association.
What people say about us
PROOF-HD: understanding the preliminary results and balancing our expectations
– June 12th, 2023
Prilenia presented the preliminary topline results of the PROOF-HD clinical trial (PRidopidine Outcome On Function in Huntington Disease) at the end of April. Last year, the Moving Forward team wrote a news piece about this trial.
Now, we look at the first findings of PROOF-HD and share our expectations for the near future. PROOF-HD enrolled 499 participants with early manifest Huntington’s disease (HD) in the U.S., Canada, Austria, Czech Republic, France, Germany, Italy, the Netherlands, Poland, Spain and the United Kingdom.
Enroll-HD: 10 Years Observing HD
– March 15th, 2023
Enroll-HD is the world’s largest observational study being conducted in HD. This study is promoted by the CHDI Foundation, Inc. to speed up the development of effective treatments for Huntington’s Disease. Enroll-HD aims to observe and monitor how HD affects people and how it changes over time. It is focused on collecting a huge amount of demographic, clinical and biological information from the worldwide HD community with three specific goals: enhance the understanding of HD, support clinical trials and improve clinical care.
JOIN-HD: A platform for Juvenile HD
– March 9th, 2023
JOIN-HD is a worldwide registry for families affected by Juvenile onset Huntington’s Disease (JoHD), which aims to shed light on this diagnosis, bring together those impacted by JoHD, increase awareness and knowledge about this condition, facilitate research and help advocate for better care.
Juvenile onset Huntington’s Disease is diagnosed when a 20-year-old person or younger develops unequivocal HD symptoms.
Moving Forward: Hei Norway!
– June 7th 2023
The Moving Forward project has just started to operate in Norway. The European Huntington Association is working in close collaboration with the Norwegian Huntington Association, Landsforeningen for Huntingtons sykdom, to better understand the needs of the younger generations impacted by Huntington’s disease and provide them with adequate support and information.
The European Huntington Association met the Icelandic HD Community – and was really impressed
– May 22nd 2023
The European Huntington Association was very happy to attend the Conference of the newly established HD Association of Iceland.The meeting was held at the modern campus of the Reykjavík University on May 15th, the International Huntington’s Disease Awareness Day.
About 50 family members, healthcare professionals and researchers attended this Conference with the topic “Developments in Huntington’s Disease: From Genetics to Therapy”, which was also live streamed.
30th Anniversary of the HD Gene Discovery
– May 10th, 2023
30 years have passed since the HD gene discovery in March 1993. The EHA acknowledges every single day the impact that the discovery of the mutated gene that causes Huntington’s Disease (HD) has had on the global HD community.
At the same time, the EHA realizes that the younger generations from HD families are often unaware of the importance of this scientific breakthrough to so many aspects of their lives.
Therefore, the EHA/Moving Forward team is launching an online campaign with interviews to key HD family members and professionals who will share all the stories and details about this discovery.
This first video explains what happened in Venezuela 30 years ago and how this still impacts us today. The video is in Spanish, with English subtitles.