分类： 新闻

高清宣传员 Ashley Clarke 分享她在 uniQure 总部的经历

As well as being an ambassador for the Huntington’s Disease Youth Organisation (HDYO) Ashley Clarke is an advocate for the HD-Community Advisory Board (HD-CAB), a group that represents the patient […]

抗击亨廷顿病：两名年轻中学生如何为亨廷顿病筹集到 $2000 的善款

Jasmine and Sai are high school students from the US.  They’re two young people who are determined to make a difference and inspire others to follow suit.  A fundraising initiative […]

巴西正式设立全国亨廷顿氏病日

After being approved by the Chamber of Deputies last year, the Bill 5060/13 was finally published in the Official Diary of the Union last month, 21st of June, establishing the […]

迪米特里-波菲（探索亨廷顿）在一部新的纪录片中展示了他的冒险经历

The HD Community already knows Dimitri Poffé’s adventures too well, and now, the world will too. The French traveler who is doing a bicycle trip through all South America to […]

2024年中东和北非罕见病组织年会暨展览会

MENA Organization for Rare Diseases announces the third annual meeting, MENA Organization for Rare Diseases Annual Meeting & Exhibition 2024 that will be held in Movenpick Grand Al Bustan Dubai […]

PTC Therapeutics公司分享PIVOT-HD临床试验在亨廷顿病患者中的积极中期数据

2023 年 6 月 21 日 PDF 版--12 周内血液亨廷汀（HTT）蛋白水平呈剂量依赖性降低--耐受性良好，未出现与治疗相关的严重不良事件或 NfL 峰值--会议 [...]

uniQure公司宣布AMT-130基因疗法治疗亨廷顿氏病的美国I/II期临床试验的最新情况

~ AMT-130 continues to be generally well-tolerated across both dose cohorts ~ ~ Patients treated with AMT-130 show preserved function compared to baseline and clinical benefits relative to natural history […]

葡萄牙全国亨廷顿氏症日

Today, 15th June, is National Huntington’s Disease Day in Portugal. To honour this special date, we have a message from the Portuguese association, Associação Portuguesa de Doentes de Huntington (APDH) […]

现在是五月宣传月!

It’s May Awareness Month! Each year, the global Huntington’s community unites during the month of May in a shared mission to raise awareness for the thousands of people affected by […]

Prilenia宣布证明HD研究的结果：充满希望，但结果喜忧参半!

Today, April 25th, Prilenia announced results from the PROOF-HD clinical trial for Huntington’s Disease. Some of the participants showed significant benefits from the Pridopidine drug, while others did not benefit at all.  This […]