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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.
“What Can I Do?” – The second informal meeting for people at-risk for HD and people with premanifest HD in Spain
– May 5th, 2023
The Moving Forward team is organizing the second informal meeting for people at-risk for HD and people with premanifest HD in Spain. The meeting will take place at the Centro Social Playa Gata, headquarters of ACHE – Asociación Corea de Huntington Española in Madrid, from 16:00 to 18:00 on the 1st of July (Saturday).
Enroll-HD: 10 Years Observing HD
– March 15, 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.
Roche GENERATION HD2: giving Tominersen a second chance
– February 14th, 2023
After a hard setback in March 2021, when Roche stopped the GENERATION HD1 trial because of potential safety issues, the company is now fully prepared to give its huntingtin-lowering drug, Tominersen, a second chance.In fact, at the end of 2021, a comprehensive data analysis led Roche to conclude that the drug seemed to have benefited younger people who began the trial in earlier stages of HD.
