ニュース

国際ハンチントン協会とヨーロッパハンチントン協会は、5月の意識向上月間を最も刺激的で希望に満ちた形で終えるため、南米を旅しながらコミュニティに感動を与えているハンチントン病の提唱者、ディミトリ・ポッフェを招いてウェビナーを開催しました。 続きを読む...

HDSI (Huntington's Disease Society of India) は、HDを患う家族との連帯を表明し、認識を高めるために、著名な建造物をライトアップするHDライトアップを実施し、HD 5月啓発月間を祝います。誰もが 続きを読む...

If the situation in Ukraine isn’t desperate enough, spare a thought for those with the added burden of Huntington’s Disease. Danuta Lis, president of the Polish HD Association and Bea De Schepper, vice president of the Belgian Huntington Liga (Flanders) have 続きを読む...

Yesterday, Prilenia hosted a webinar updating on the Phase III trial with Pridopidine. Thank you to everyone who join and a special thanks to our speakers, Michael Hayden, Andrew Feigin, Ralf Reilman and Anne Rosser and also to Dina de 続きを読む...

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 続きを読む...

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 続きを読む...

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 続きを読む...

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 続きを読む...

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 続きを読む...

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 続きを読む...