分类： 故事

与 HD 一起成长：Siri Hagen Kjølaas 的见解和支持策略

At last year’s EHDN & Enroll-HD Conference in Strasbourg, we had the privilege of interviewing Siri Hagen Kjølaas, Ph.D., to discuss her groundbreaking research on the psychosocial challenges faced by […]

宜居生活》--一本重点介绍世界各地受 HD 影响的人们的故事的新书

PRESS RELEASE – October 25, 2024, Moscow, Idaho, USAWe are pleased to announce the launch of a new book about Huntington’s disease (HD) called, Livable Lives: Conversations with the Huntington’s […]

不懈探索纪事：创建基金会

I belong to the third generation of a family affected by Huntington’s Disease, but it wasn’t until 2024, thanks to the tireless efforts of my second father, F. Cook, that […]

我们存在塔尼塔-艾伦讲述了她为在美国获得基因检测而进行的斗争

In her memoir “We Exist”, Tanita Allen tells of the difficulty she had in having her symptoms correctly diagnosed as Huntington’s Disease. Time and again, she was misdiagnosed because doctors refused […]

高清社区感悟：知识、同情和鼓励--EHA 会议给了我启发

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 […]