Kategoria: Uutiset

Kansainvälinen Huntington-yhdistys on nyt Rare Diseases Internationalin jäsen!

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 julkisti päivityksen AMT-130-geeniterapian vaiheen I/II kliinisistä tutkimuksista Huntingtonin taudin hoidossa.

~ 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 […]

Yhteisöjen voimaannuttaminen: Yhteenveto Brasilian Huntingtonin yhdistyksen (ABH) viimeaikaisista aloitteista.

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, HD Advocate, kertoo kokemuksistaan uniQuren pääkonttorissa.

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: miten kaksi nuorta lukiolaista keräsi $2000 Huntingtonin tautia varten.

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 […]

Kansallinen Huntingtonin tautipäivä perustetaan virallisesti Brasiliassa.

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 Poffén (Explore for Huntington) seikkailu esitetään uudessa dokumentissa.

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 […]

MENA Organization for Rare Diseases vuosikokous ja näyttely 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 julkistaa positiivisia väliaikatietoja Huntingtonin tautia sairastavilla potilailla tehdystä kliinisestä PIVOT-HD-tutkimuksesta.

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 julkisti päivityksen Yhdysvalloissa toteutettavasta kliinisestä vaiheen I/II tutkimuksesta, joka koskee AMT-130-geeniterapiaa Huntingtonin taudin hoidossa.

~ 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 […]