Kategori: Berita

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 […]

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 […]

SOM Biotech mengumumkan hasil studi Fase 2b

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, […]

Kampanye Hari Penyakit Langka 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 Meluncurkan Program Kepemimpinan Pemuda

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 […]

Anak berusia dua belas tahun menerbitkan buku anak-anak tentang Penyakit Huntington

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 mengumumkan keselarasan dengan FDA pada elemen-elemen kunci dari jalur persetujuan yang dipercepat untuk AMT-130

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 […]

"The Present", film dokumenter yang menampilkan Dimitri Poffé, kini tersedia di Youtube

Dimitri Poffé is an already known member of the HD Community. After testing positive for Huntington’s Disease, Dimitri embraced a bicycle journey through South America. In this project, called Explore […]

PTC Therapeutics Menandatangani Perjanjian Lisensi dan Kolaborasi Global dengan Novartis untuk Program Penyakit Huntington PTC518

December 2, 2024 – PTC to receive $1.0B in cash at closing –– PTC is eligible to receive up to $1.9B in development, regulatory and sales milestones –– PTC to share profits in the U.S. and […]

Sage Therapeutics menghentikan pengembangan dalzanemdor dalam HD

The Phase 2 DIMENSION Study did not meet its primary endpoint Dalzanemdor was generally well-tolerated; no new safety signals were observed Based on these data, the Company does not plan […]