Campagne de la Journée des maladies rares 2023

Join our campaign for Rare Disease Day! February 28th is Rare Disease Day, where the rare community comes together, finds support and raises awareness for rare diseases across the globe […]
Roche/Genentech fait le point sur l'étude GENERATION HD2

Roche/ Genentech announce that Phase II GENERATION HD2 study is now open. This is great news for the international community since it is planned to run in 15 countries (Argentina, […]
Novartis met fin à l'étude VIBRANT-HD

Novartis shared today the difficult news that they are stopping the VIBRANT-HD study of Branaplam, after some participants devoloping side effects. Read the full Novartis letter Even if this news […]
L'Association internationale de Huntington reçoit un don très généreux

International Huntington Association has received a very generous donation. A Norwegian donor is behind the donation. He wishes to remain anonymous. The money is earmarked for a new position at […]
uniQure a annoncé qu'elle reprenait le recrutement des patients à la dose la plus élevée de l'essai AMT-130.

A Message to the Huntington’s Disease Community from uniQure Dear Huntington’s Disease Community Members, This morning, uniQure issued a press release which included an update on our clinical trial ofAMT-130 […]
Wave Life Sciences annonce une mise à jour positive de l'essai de phase 1b/2a SELECT-HD avec des résultats initiaux indiquant l'engagement de cibles sélectivement alléliques avec WVE-003 dans la maladie de Huntington.

September 20, 2022 at 7:30 AM EDT PDF Version Single doses of WVE-003 appear generally safe and well-tolerated CSF mutant huntingtin (mHTT) protein was reduced following single doses of 30 […]
uniQure annonce une mise à jour sur la cohorte à faible dose de l'essai clinique de phase I/II de la thérapie génique AMT-130 pour le traitement de la maladie de Huntington.

~ Treatment generally well-tolerated with no significant safety issues related to AMT-130 in treated patients through one year of follow-up ~ ~ A mean reduction of 53.8% of mutant HTT […]
Annexon Biosciences met à jour les résultats des essais

ANNEXON BIOSCIENCES REPORTS PHASE 2 CLINICAL TRIAL RESULTS DEMONSTRATING UPSTREAM CLASSICAL COMPLEMENT INHIBITION ASSOCIATED WITH CLINICAL BENEFIT IN HUNTINGTON’S DISEASE On June 7, Annexon, that is a clinical-stage biopharmaceutical company […]
Synthèse du mois de mai

May Awareness Month 2022 came to an end. Between the webinars, weekends away and Light It Up For HD, there were a lot of initiatives coming from all the different […]
Webinar - Explorer pour Huntington : L'aventure de Dimitri Poffé en Amérique latine

To finish May Awareness Month in the most inspiring and hopeful way possible, the International Huntington Association and European Huntington Association had a webinar with Dimitri Poffé, a Huntington’s Disease […]