HDYO will launch JOIN-HD, the Juvenile onset HD Global Registry, that will be open for Stage 1: Open Enrollment, starting February 4th. JOIN-HD is a global registry that collects experiences from both young people who have Juvenile HD and their Read more…
Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). The speaker works as a research physician and Read more…
Some encouraging news has just come in from Roche. Analysis of the results of Roche’s Phase III GENERATION HD1 trial, which was stopped in March 2021, has found that a subset of patients may benefit from Tominersen. The analysis showed Read more…
It is with great sadness we announce the passing of one of our founders. Gerrit Dommerholt passed away in the Netherlands on the 31st December. Gerrit’s contribution to HD can hardly be overstated. He helped establish the association in the 1980s Read more…
The International Huntington Association is committed to helping families impacted by Huntington’s disease around the world. As such, one of our current ongoing collaborations focuses on developing patient organizations and support services in Asia. In conjunction with the Chinese Huntington Read more…
IHA has partnered with the Huntington Disease Youth Organisation and European Huntington Association to create a global Community Advisory Board, named HD-CAB. HD-CAB is made up of representatives from HD families around the globe. Members from 20 different countries provide Read more…
Seven members of the PTC Therapeutics team joined 11 HD-CAB team members for an advisory board on the 3rd November. Sian O’Neill, Senior Director of Patient Engagement EMEA & AP wrote following the meeting to say “Thank you again for Read more…
The first Huntington’s Disease Meeting for the Arabic Countries was attended by participants from 14 different countries. Thanks for its success goes to the chair and keynote speaker Prof. Bernhard Landwehrmeyer along with a number of other high-profile presenters. The Read more…
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