Kategória: Príbehy

Vyrastanie s HD: Poznatky a stratégie podpory so Siri Hagen Kjølaasovou

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 […]

Životy, ktoré sa dajú prežiť - nová kniha, ktorá približuje príbehy ľudí postihnutých HD na celom svete

TLAČOVÁ SPRÁVA - 25. októbra 2024, Moskva, Idaho, USAS potešením oznamujeme vydanie novej knihy o Huntingtonovej chorobe (HD) s názvom "Životné životy": Rozhovory s Huntingtonovou [...]

Kronika neúnavného pátrania: Vznik nadácie

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 […]

Existujeme: Tanita Allen rozpráva o svojom boji za prístup ku genetickému testovaniu v Spojených štátoch

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 […]

Poznatky komunity HD: Konferencia EHA ma inšpirovala

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 […]