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What people say about us
What people say about us
Norway, Sweden, Denmark, and Finland together at the Moving Forward Webinar!
– November 29th2023
On the 22nd of November, the Moving Forward team held a webinar for the Scandinavian countries on HD research updates. There were just over 70 participants from Norway, Sweden, Denmark, and Finland.
We were joined by Astri Arnesen, Lasse Pihlstrøm and Åsa Petersen to talk about what is happening in HD research globally and what is happening specifically in Norway and Sweden.
Past, present and future in HD research: Summary of the 4th Moving Forward meeting in Spain
– 21st November 2023
On November 11th, the fourth Moving Forward meeting in Spain took place in one of the warmest Spanish cities, Malaga. The meeting, with the topic “Past, Present and Future in HD research”, brought together more than 50 HD family members. Attendees came from almost all Andalusian provinces, Seville, Cadiz, Cordoba, Granada and Malaga, but also from other more distant Spanish cities, such as Barcelona, Valencia and Cantabria. The day was full of positive emotions and energy and, although there were some last-minute changes, everything went well.
What are the needs of the French HD families? - A survey
– November 8th 2023
The Moving Forward team is working together with the Association Huntington France (AHF) to assess the specific needs of the French HD community.
If you are from an HD family, you live in France and you want your voice to be heard, please use this opportunity to share what’s on your mind! Take this short, simple and anonymous survey before November 20th.
The European Huntington Association and the Moving Forward team are very excited with this collaboration and hope that this French X-ray will help guide the work of the HD organizations in France.
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.