国际亨廷顿协会现在是国际罕见病协会的成员!
这是官方消息!国际亨廷顿协会现已成为国际罕见病协会(RDI)的一部分。这对 IHA 来说是巨大的一步,因为这意味着我们不仅在 HD 社区发挥着重要作用,而且还 阅读更多...
这是官方消息!国际亨廷顿协会现已成为国际罕见病协会(RDI)的一部分。这对 IHA 来说是巨大的一步,因为这意味着我们不仅在 HD 社区发挥着重要作用,而且还 阅读更多...
~ 接受 AMT-130 治疗的患者继续显示出神经功能得到保护的证据,与纳入标准匹配的自然病史相比,具有潜在的剂量依赖性临床益处 ~ ~ CSF NfL 平均值继续显示出低剂量患者的良好趋势 阅读更多...
Almost exactly 18 months after my diagnosis of suffering from Huntington’s Disease, I embarked on the journey to the European Huntington Conference in Belgium. The days in Blankenberge became an informative and occasionally overwhelming experience for me. Community, compassion, and 阅读更多...
The Brazilian Huntington Association (ABH – Associação Brasil Huntington) is incredibly active and has been conducting numerous initiatives for the community. This level of commitment is vital because it not only benefits those affected by the disease but also raises 阅读更多...
The EHDN and Enroll-HD 2024 is a collaborative event combining the EHDN Plenary Meeting and the Enroll-HD Congress. The event will be held across three days, and will offer the opportunity for delegates to hear about the latest advances in basic, translational 阅读更多...
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 voice in the design and conduct of clinical trials. Following 阅读更多...
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 they set up and managed recently raised an incredible $2000 阅读更多...
继去年获得众议院批准后,第 5060/13 号法案最终于上个月(6 月 21 日)在《联邦官方日记》上公布,确定 9 月 27 日为 "全国亨廷顿氏病宣传日"。 阅读更多...
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 raise awareness for Huntington’s Disease will now have his own 阅读更多...
MENA Organization for Rare Diseases announces the third annual meeting, MENA Organization for Rare Diseases Annual Meeting & Exhibition 2024 that will be held in Beach Rotana, in Dubai from 16 to 19 May 2024. This conference will be the 阅读更多...