Kategori: Cerita

Tumbuh dengan HD: Wawasan & Strategi Dukungan bersama 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 - buku baru yang menyoroti kisah-kisah dari orang-orang yang terkena dampak HD di seluruh dunia

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 […]

Kronik Pencarian Tanpa Henti: Pembuatan sebuah Yayasan

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 […]

Kami Ada: Tanita Allen menceritakan perjuangannya untuk mendapatkan akses ke pengujian genetik di Amerika Serikat

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 […]

Wawasan Komunitas HD: Pengetahuan, Empati, dan Dorongan - Konferensi EHA Menginspirasi Saya

Hampir tepat 18 bulan setelah saya didiagnosis menderita Penyakit Huntington, saya memulai perjalanan ke Konferensi Huntington Eropa di Belgia. Hari-hari di Blankenberge menjadi sebuah [...]