Catégorie : Nouvelles

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 […]

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 annonce les résultats de l'étude de phase 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, […]

Campagne pour la Journée des maladies rares 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 lance un programme de leadership pour les jeunes

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 […]

Un enfant de 12 ans publie un livre pour enfants sur la maladie de 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 annonce un alignement avec la FDA sur les éléments clés de la voie d'homologation accélérée de l'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 […]

Le documentaire "The Present" de Dimitri Poffé est désormais disponible sur 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 conclut un accord mondial de licence et de collaboration avec Novartis pour le programme PTC518 sur la maladie de Huntington

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 […]