ニュース - 国際ハンチントン協会

Be Empowered by Tanita Allen, the new IHA website column

Tanita Allen, a dedicated advocate for Huntington’s Disease and author of her much labored memoir “We Exist”, is starting a new column for the IHA website, called Be Empowered by […]

Remembering Xi

It is with great sadness that we received the news that IHA Vice President Cao Xi has passed away, after a short illness. Xi was also the Founder and President […]

SOM Biotech presents the Phase 2b study results with SOM3355 demonstrating a unique profile with robust improvements of chorea in Huntington’s Disease Patients and a safe profile with no somnolence, […]

2025年希少疾病の日キャンペーン

The International Huntington Association, in collaboration with the European Huntington Association, is organizing a campaign for Rare Disease Day 2025, on the 28th February. The slogan for this year’s RDD […]

RDI、ユース・リーダーシップ・プログラムを開始

Rare Diseases International (RDI), announced the launch of the RDI Youth Leadership Programme, an initiative designed to engage and empower young people within the rare disease community. This programme aims […]

12歳がハンチントン病についての児童書を出版

Toronto student writes book so others will treat her grandpa kindly December 11, 2024 — Toronto, Ontario, Canada Most people have never heard of Huntington’s disease. This lack of awareness […]

UniQure社、AMT-130の早期承認パスウェイの主要要素についてFDAとの調整を発表

Yesterday, uniQure issued a press release announcing alignment with the US Food and Drug Administration (FDA) on key elements of an accelerated approval pathway for uniQure‘s AMT-130 program in Huntington’s […]

ディミトリ・ポッフェが出演するドキュメンタリー『The Present』がYoutubeで公開中

Dimitri Poffé is an already known member of the HD Community. After testing positive for Huntington’s Disease, Dimitri embraced a bicycle journey through South America. In this project, called Explore […]

PTCセラピューティクス社、ノバルティス社とPTC518ハンチントン病プログラムに関するグローバルライセンスおよび提携契約を締結

December 2, 2024 – PTC to receive $1.0B in cash at closing –– PTC is eligible to receive up to $1.9B in development, regulatory and sales milestones –– PTC to share profits in the U.S. and […]

セージ・セラピューティクス社、HD治療薬ダルザネムドールの開発を中止

The Phase 2 DIMENSION Study did not meet its primary endpoint Dalzanemdor was generally well-tolerated; no new safety signals were observed Based on these data, the Company does not plan […]

カテゴリー: ニュース