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🙌 Join the French Online Session! Huntington: Unique disease - Multiple paths
– March 7th, 2024
The Moving Forward team, in collaboration with the Ligue Huntington Francophone Belge and the Association Huntington France are organizing an online session for the French-speaking HD community. The session will take place on 🗓️ March 26th, from 18:00 onward and it will not be recorded.
We invited six family members with different paths regarding HD to share their personal stories. Attendees will have the chance to hear about real-life experiences, ask questions and share their own personal stories if they want.
Register now to participate in this special meeting.
Upcoming Spanish Online Session! Huntington - One Disease, Dozens of Stories
– March 6th, 2024
The Moving Forward team is organizing an online informal meeting for the Spanish-speaking community to hear about different stories and personal experiences related to Huntington’s disease. The session will take place on March 21st, from 19:00 onward and it will not be recorded.
We have invited one person in each of these situations to share their stories: Being at risk for HD, being gene positive, being gene negative, being a patient, being a caregiver, being an HD professional and having a genetic test result in the gray zone.
This will be a unique experience!
An inspiring online session for the Norwegian HD Community
– February 15th 2024
At the end of January, the Moving Forward team organized an online session for the Norwegian HD community with the topic “Genetic Testing for HD: There are no Right or Wrong Choices”.
We invited three people to tell their stories about their connection to Huntington’s disease and their experiences with HD genetic testing. Some months ago, when we conducted a survey to understand the needs of the Norwegian HD community, people told us they would like to learn more about genetic testing.
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.