Kategorie: Geschichten

Aufwachsen mit HD: Einblicke und Unterstützungsstrategien mit Siri Hagen Kjølaas

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 […]

Livable Lives - ein neues Buch mit Geschichten von Menschen, die weltweit von Huntington betroffen sind

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 […]

Chronik einer unerbittlichen Suche: Die Entstehung einer Stiftung

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 […]

Es gibt uns: Tanita Allen berichtet über ihren Kampf um den Zugang zu Gentests in den Vereinigten Staaten

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 […]

HD Gemeinschaft Einblicke: Wissen, Empathie und Ermutigung - Die EHA-Konferenz hat mich inspiriert

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 […]