Categoria: Storie

Crescere con l'HD: approfondimenti e strategie di supporto con 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 […]

Vite vivibili - un nuovo libro che mette in luce le storie di persone colpite dall'HD in tutto il mondo

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 […]

Cronaca di una ricerca implacabile: La creazione di una fondazione

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 […]

Noi esistiamo: Tanita Allen racconta la sua lotta per ottenere l'accesso ai test genetici negli Stati Uniti

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 […]

Approfondimenti della comunità HD: Conoscenza, empatia e incoraggiamento - La conferenza EHA mi ha ispirato

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 […]