HD Focus

A Journey of Connection, Courage, and Hope Why attending conferences can truly change your life – Written by Claudia Villa on 16th April 2025 Huntington’s disease…

Scottish Huntington’s Association is co-hosting a unique webinar presented by Woody’s grand-daughter Anna Canoni, President of Woody Guthrie Publications. As […]

Avoid the hype: HDBuzz has Ten Golden Rules for navigating news stories or press releases about Huntington's disease.

Recently, during a HIPE discussion the conversation shed light on the complexities of managing chorea, a involuntary movement frequently...

Aktualizácia z 19.4.2025  Testovanie lieku pokračuje v novej štúdii a tento týždeň bola upravená dávka ktorá sa počas štúdie používa.Celkovo je v štúdii 301 účastníkov a dostávajú dávku každých 16 týždňov. Podľa nezávislej komisie asi prináša liek nejaký benefit nakoľko upravili dávkovanie počas štúdie. Testovanie by malo byť ukončené v roku 2026. Originál článku tu. …

Tominersen – Znovuotvorenie programu Čítajte viac »

Roche gave an update this week about GENERATION HD2, testing the HTT-lowering drug tominersen in people with HD. The trial is continuing, but only the higher dose will move forward. What does this update mean for the HD community and this trial?

Roche has announced the continuation of the GENERATION HD2 Phase II clinical trial evaluating tominersen in individuals with early signs of Huntington’s disease. Following an interim analysis by an independent committee, no […]

Vi har glädjen att bjuda in er till årets Nationella möte som går av stapeln 22 oktober på hotell Kusten i Majorna, Göteborg. I år har man möjlighet att både delta på plats eller via länk. OBS! Anmälan krävs till båda. Läs mer om tider och anmälan nedan. Antal platser på plats i Göteborg är…

Inlägget Nationellt möte 22 oktober! Läs mer och anmäl dig här! publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

LEXINGTON, Mass. and AMSTERDAM, April 17, 2025 (GLOBE NEWSWIRE) -- uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing...

HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS MORE THAN $1.8 MILLION TO EXPAND HDSA CENTERS OF EXCELLENCE NETWORK TO SIXTY-NINE SITES ...

The post HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS MORE THAN $1.8 MILLION TO EXPAND HDSA CENTERS OF EXCELLENCE NETWORK TO SIXTY-NINE SITES first appeared on Huntington's Disease Society of America.

~ Breakthrough Therapy designation based on clinical evidence from Phase I/II trials showing meaningful slowing of disease progression ~ ~ Additional regulatory update and guidance on the Biologics License Application […]

Een mooie mijlpaal! Tien jaar geleden werd het eerste Huntingtoncafé gehouden; een periodiek samenzijn in een informele sfeer waarbij een spreker een bepaald thema uitdiept en er vragen over beantwoordt.

Inmiddels zijn er door het hele land Huntingtoncafés, aangeboden door de verschillende Regionale Expertisecentra. De bijeenkomsten zijn een plek geworden voor ontmoeting, herkenning en ondersteuning. In het Kontaktbkad van september vertelt Jesseke de Man, de bedenkster van het Huntingtoncafé, meer over het idee erachter en wat het patiënten oplevert.

Välkommen att delta på ett stödgruppsmöte i Stockholm lördagen 17 maj. Läs mer om programmet och hur du anmäler dig här nedan! Hoppas vi ses!  

Inlägget Välkommen på stödgruppsmöte i Stockholm 17 maj publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Huntington’s disease (HD) is caused by extra repeats of the DNA letters CAG within the genetic code of the huntingtin gene. We used to think that those CAG lengths were stable in most tissues, but we now have a growing understanding that CAG instability contributes to HD. Somatic instability is the concept that CAG repeats […]

Sabato 12 aprile si è tenuta l’annuale assemblea degli Associati di Huntington Onlus, un’occasione per rivedersi in collegamento da diverse città italiane, condividere le piste di lavoro che si stanno affrontando, passando per un bilancio dell’anno passato.

L'articolo I soci di Huntington Onlus in Assemblea – Incontro 12 aprile  proviene da huntington-onlus.

When it comes to discussing difficult topics in relationships, the conversation surrounding Huntington's disease (HD) can be particularly...

We often think of the adult brain like a completed jigsaw puzzle—once all the pieces are in place, that’s it. If a few pieces go missing, as happens in neurodegenerative diseases like Huntington’s disease (HD), there’s not much we can do except try to slow the loss. But new research is challenging that idea in a big way. A new study has shown that it may be possible to grow new brain cells in the adult brain—and not just any cells, but the exact pieces that HD takes away. Even more amazing? These new cells can connect with the brain’s existing networks, as if finding their place in the puzzle and clicking right into place. This discovery opens the door to a bold new goal: not just slowing the loss, but rebuilding the puzzle itself.

What Gets Lost in Huntington’s Disease?

To see why this study matters, let’s start with the pieces that go missing in HD. The disease causes progressive damage to an area of the brain called the striatum. The striatum sits almost exactly in the center of the head and helps control movement, emotions, and decision-making. The specific puzzle pieces lost here are called medium spiny neurons, or MSNs.

Join us on Monday, 12 May for a special Community and Online Forum hosted by Skyhawk Therapeutics, where...