Kategori: Berättelser

Att växa upp med HD: Insikter och stödstrategier med 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 - en ny bok som lyfter fram berättelser från människor som påverkats av HD runt om i världen

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 […]

Krönika över en obeveklig strävan: Skapandet av en stiftelse

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 […]

Vi existerar: Tanita Allen berättar om sin kamp för att få tillgång till genetiska tester i USA

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 Community Insikter: Kunskap, empati och uppmuntran - EHA-konferensen inspirerade mig

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 […]