PTC518 PIVOT-HD Study Achieves Primary Endpoint

May 5, 2025 PDF Version – Study met primary endpoint with dose-dependent blood HTT protein lowering at Week 12 – – Favorable dose-dependent trends across clinical scales in Stage 2 […]
May Awareness Month 2025 – Shining a light on HD: One Action a Day

Every May, communities around the world come together to shine a light on Huntington’s Disease (HD). From families and caregivers to clinicians, researchers, and advocates, we are united by one […]
UniQure оголошує про надання препарату AMT-130 статусу проривної терапії для лікування хвороби Хантінгтона від Управління з контролю за продуктами і ліками США

~ Breakthrough Therapy designation based on clinical evidence from Phase I/II trials showing meaningful slowing of disease progression ~ ~ Additional regulatory update and guidance on the Biologics License Application […]
Оновлення щодо фази II дослідження GENERATION HD2

Roche has announced the continuation of the GENERATION HD2 Phase II clinical trial evaluating tominersen in individuals with early signs of Huntington’s disease. Following an interim analysis by an independent committee, no […]
Погляд назад на Конгрес HDYO 2025

The HDYO Congress 2025 brought together young people, families, researchers, and professionals from around the world for an unforgettable event dedicated to the Huntington’s Disease community. Over three inspiring days, […]
23 березня: Святкування Дня подяки у спільноті людей з хворобою Гантінгтона

“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, […]
"Будьте спроможними" від Таніти Аллен, нова колонка на сайті IHA

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 […]
SOM Biotech оголошує результати фази 2b дослідження

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, […]
Кампанія "День рідкісного захворювання 2025

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 запускає програму молодіжного лідерства

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 […]