Arşivler

March 23: Celebrating Gratitude Day in the Huntington’s Disease Community

“Gratitude Day is a way to honor the collaboration of HD families with clinicians and scientists, which started with the efforts to identify the Huntington’s disease gene in the 1980s, […]

Be Empowered by Tanita Allen, the new IHA website column

Tanita Allen, a dedicated advocate for Huntington’s Disease and author of her much labored memoir “We Exist”, is starting a new column for the IHA website, called Be Empowered by […]

Be Empowered by Tanita Allen: Finding Strength in Our Shared Journey

Hello, everyone! I am truly honored to introduce myself as the newest columnist for the International Huntington Association’s online platform. Writing for this community is not only a privilege, but […]

Remembering Xi

It is with great sadness that we received the news that IHA Vice President Cao Xi has passed away, after a short illness.  Xi was also the Founder and President […]

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 […]

SOM Biotech Faz 2b çalışma sonuçlarını açıkladı

SOM Biotech presents the Phase 2b study results with SOM3355 demonstrating a unique profile with robust improvements of chorea in Huntington’s Disease Patients and a safe profile with no somnolence, […]

Nadir Hastalıklar Günü 2025 Kampanyası

The International Huntington Association, in collaboration with the European Huntington Association, is organizing a campaign for Rare Disease Day 2025, on the 28th February. The slogan for this year’s RDD […]

RDI Gençlik Liderlik Programını Başlatıyor

Rare Diseases International (RDI), announced the launch of the RDI Youth Leadership Programme, an initiative designed to engage and empower young people within the rare disease community. This programme aims […]

On iki yaşındaki çocuk Huntington Hastalığı hakkında bir çocuk kitabı yayınladı

Toronto student writes book so others will treat her grandpa kindly December 11, 2024 — Toronto, Ontario, Canada Most people have never heard of Huntington’s disease. This lack of awareness […]

UniQure, AMT-130 için hızlandırılmış onay yolunun temel unsurları konusunda FDA ile uyum sağlandığını duyurdu

Yesterday, uniQure issued a press release announcing alignment with the US Food and Drug Administration (FDA) on key elements of an accelerated approval pathway for uniQure‘s AMT-130 program in Huntington’s […]