Kategoria: Aktualności

Międzynarodowe Stowarzyszenie Huntingtona jest teraz członkiem Rare Diseases International!

It is official! The International Huntington Association is now a part of RDI, Rare Diseases International. This is a huge step for IHA, as it means we are not only […]

uniQure ogłasza aktualizację badań klinicznych fazy I/II terapii genowej AMT-130 w leczeniu choroby Huntingtona

~ Patients treated with AMT-130 continue to show evidence of preserved neurological function with potential dose-dependent clinical benefits relative to an inclusion criteria-matched natural history of the disease ~ ~ Mean […]

Wzmacnianie pozycji społeczności: Podsumowanie ostatnich inicjatyw Brazylijskiego Stowarzyszenia 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 […]

Ashley Clarke, rzeczniczka HD, dzieli się swoimi doświadczeniami w siedzibie 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: jak dwoje młodych licealistów zebrało $2000 na rzecz choroby Huntingtona

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 […]

Narodowy Dzień Choroby Huntingtona został oficjalnie ustanowiony w Brazylii

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) przedstawia swoją przygodę w nowym filmie dokumentalnym

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 […]

Coroczne spotkanie i wystawa MENA Organization for Rare Diseases 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 udostępnia pozytywne wstępne dane z badania klinicznego PIVOT-HD u pacjentów z chorobą Huntingtona

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 […]

uniQure ogłasza aktualizację amerykańskich badań klinicznych fazy I/II terapii genowej AMT-130 w leczeniu choroby Huntingtona

~ AMT-130 continues to be generally well-tolerated across both dose cohorts ~ ~ Patients treated with AMT-130 show preserved function compared to baseline and clinical benefits relative to natural history […]