Kategorija: Novice

Opolnomočenje skupnosti: Povzetek nedavnih pobud brazilskega združenja 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, zagovornica HD, deli svoje izkušnje na sedežu podjetja 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 […]

Dvig proti Huntingtonovi bolezni: kako sta dva mlada srednješolca zbrala $2000 za Huntingtonovo bolezen

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 Braziliji uradno razglasijo nacionalni dan Huntingtonove bolezni

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) je svojo pustolovščino prikazal v novem dokumentarnem filmu

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 […]

Letno srečanje in razstava organizacije MENA za redke bolezni 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 […]

Družba PTC Therapeutics deli pozitivne vmesne podatke iz kliničnega preskušanja PIVOT-HD pri bolnikih s Huntingtonovo boleznijo

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 sporoča posodobitev ameriškega kliničnega preskušanja faze I/II genske terapije AMT-130 za zdravljenje Huntingtonove bolezni

~ 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 […]

Nacionalni dan Huntingtonove bolezni na Portugalskem

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) […]

Maj je mesec ozaveščanja!

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 […]