Kategória: Novinky

Posilnenie postavenia komunít: Rekapitulácia nedávnych iniciatív Brazílskej asociácie 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, HD Advocate, sa delí o svoje skúsenosti v centrále spoločnosti 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 […]

Vzostup proti Huntingtonovej chorobe: ako dvaja mladí stredoškoláci vyzbierali $2000 pre Huntingtonovu chorobu

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 […]

V Brazílii bol oficiálne vyhlásený Národný deň Huntingtonovej choroby

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) zažil svoje dobrodružstvo v novom dokumentárnom filme

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 […]

Výročné stretnutie a výstava Organizácie MENA pre zriedkavé choroby 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 […]

Spoločnosť PTC Therapeutics zdieľa pozitívne priebežné údaje z klinickej štúdie PIVOT-HD u pacientov s Huntingtonovou chorobou

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 […]

Spoločnosť uniQure oznamuje aktualizáciu americkej fázy I/II klinického skúšania génovej terapie AMT-130 na liečbu Huntingtonovej choroby

~ 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 […]

Národný deň Huntingtonovej choroby v Portugalsku

Today, 15th June, is National Huntington’s Disease Day in Portugal. To honour this special date, we have a message from the Portuguese association, Associação Portuguesa de Doentes de Huntington (APDH) […]

Máj je mesiac povedomia!

It’s May Awareness Month! Each year, the global Huntington’s community unites during the month of May in a shared mission to raise awareness for the thousands of people affected by […]