How to bridge the medical research and patient advocacy for HD in China

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基金会

CHDI Foundation is a privately-funded, not-for-profit biomedical research organization devoted to a single disease – Huntington’s disease. Our mission is to develop drugs that will slow the progression of Huntington’s disease and provide meaningful clinical benefit to patients as quickly as possible. To achieve this CHDI manages a diverse portfolio of research projects through a novel virtual model that encourages scientific collaboration to more directly connect academic research, drug discovery and clinical development. This helps bridge the translational gap that often exists between academic and industrial research pursuits, and which adds costly delays to therapeutic development. Our activities extend from exploratory biology to the identification and validation of therapeutic targets, and from drug discovery and development to clinical studies and trials.

http://chdifoundation.org/

亨廷顿舞蹈病患者登记

Enroll-HD is a worldwide observational study for Huntington’s disease families. It will monitor how the disease appears and changes over time in different people, and is open to people who either have HD or are at-risk. Enroll-HD is or will soon be up and running for HD families in North America, Europe, Latin America, Australia, New Zealand and some countries in Asia. It will eventually include more than 20,000 people. Monitoring people over time in a real-world setting contributes to scientific knowledge. The study is designed to accelerate the discovery and development of new therapeutics for HD.

https://www.enroll-hd.org/learn/about-this-study/

科学普及

Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.http://en.hdbuzz.net/   http://zh.hdbuzz.net/ 中文版

和你在一起 亨廷顿舞蹈症病友会  http://site.henizaiyiqi.com/wudaozheng/room/80