Archives

HD Community Insights : Connaissance, empathie et encouragement - La conférence de l'EHA m'a inspirée

Almost exactly 18 months after my diagnosis of suffering from Huntington’s Disease, I embarked on the journey to the European Huntington Conference in Belgium. The days in Blankenberge became an […]

Renforcer les communautés : Récapitulation des initiatives récentes de l'Association brésilienne de Huntington (ABH)

The Brazilian Huntington Association (ABH – Associação Brasil Huntington) is incredibly active and has been conducting numerous initiatives for the community. This level of commitment is vital because it not […]

Réunion plénière de l'EHDN et congrès Enroll-HD

L'EHDN et Enroll-HD 2024 est un événement collaboratif combinant la réunion plénière de l'EHDN et le congrès Enroll-HD. L'événement se déroulera sur trois jours, et offrira l'opportunité à [...]

Ashley Clarke, HD Advocate, partage son expérience au siège d'uniQure

As well as being an ambassador for the Huntington’s Disease Youth Organisation (HDYO) Ashley Clarke is an advocate for the HD-Community Advisory Board (HD-CAB), a group that represents the patient […]

Rise Against Huntington's : comment deux jeunes lycéens ont collecté $2000 pour la maladie de Huntington

Jasmine and Sai are high school students from the US.  They’re two young people who are determined to make a difference and inspire others to follow suit.  A fundraising initiative […]

La Journée nationale de la maladie de Huntington est officiellement instituée au Brésil

After being approved by the Chamber of Deputies last year, the Bill 5060/13 was finally published in the Official Diary of the Union last month, 21st of June, establishing the […]

Dimitri Poffé (Explore for Huntington) raconte son aventure dans un nouveau documentaire

The HD Community already knows Dimitri Poffé’s adventures too well, and now, the world will too. The French traveler who is doing a bicycle trip through all South America to […]

Réunion annuelle et exposition de l'Organisation des maladies rares de la région MENA 2024

L'Organisation MENA pour les maladies rares annonce la troisième réunion annuelle, MENA Organization for Rare Diseases Annual Meeting & Exhibition 2024 qui se tiendra à Beach Rotana, à Dubaï du [...]

Réunion annuelle et exposition de l'Organisation des maladies rares de la région MENA 2024

MENA Organization for Rare Diseases announces the third annual meeting, MENA Organization for Rare Diseases Annual Meeting & Exhibition 2024 that will be held in Movenpick Grand Al Bustan Dubai […]

PTC Therapeutics communique des résultats intermédiaires positifs de l'essai clinique PIVOT-HD chez des patients atteints de la maladie de Huntington

June 21, 2023 PDF Version – Dose-dependent lowering of blood Huntingtin (HTT) protein levels at 12 weeks –– Favorable tolerability profile with no treatment-related serious adverse events or NfL spikes –  – Conference […]