Kategori: Hikayeler

HD ile Büyümek: Siri Hagen Kjølaas ile İçgörüler ve Destek Stratejileri

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 […]

Yaşanabilir Hayatlar - dünyanın dört bir yanında HD'den etkilenen insanların hikayelerini öne çıkaran yeni bir kitap

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 […]

Amansız Bir Arayışın Öyküsü: Bir Vakfın Oluşumu

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 […]

Biz Varız: Tanita Allen, ABD'de genetik testlere erişim için verdiği mücadeleyi anlatıyor

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 Topluluğu İçgörüleri: Bilgi, Empati ve Teşvik - EHA Konferansı Bana İlham Verdi

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 […]