新闻 - 国际亨廷顿协会

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 年罕见病日运动

国际亨廷顿协会（International Huntington Association）与欧洲亨廷顿协会（European Huntington Association）合作，正在为 2 月 28 日的 "2025 年罕见病日"（Rare Disease Day 2025）组织一场宣传活动。今年罕见病日的口号是[...]

RDI 推出青年领导力计划

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 岁儿童出版关于亨廷顿氏症的儿童读物

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 宣布与 FDA 就 AMT-130 加速审批途径的关键要素达成一致

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 […]

迪米特里-波菲的纪录片 "当下 "现已在 Youtube 上发布

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 Therapeutics 与诺华公司就 PTC518 亨廷顿氏症项目达成全球许可与合作协议

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 […]

Sage Therapeutics 停止开发用于治疗 HD 的 dalzanemdor

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 […]

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