HD Focus

Day 3 of #HD2026 put HTT under the microscope. Researchers shared new insights into HTT1a, next-generation HTT-lowering approaches, somatic expansion, brain circuitry, and why boosting healthy HTT might help. Read our roundup here.

Our supporters do really amazing things – including new volunteer fundraiser Geoff Cooper who is all set to cycle across […]

⏱️ 23 min read | Day 2 of #HD2026 brought us updates on the mechanics of somatic instability, new ways to track HD in people, AI tools to help drive research forward, and developments in our understanding of the HTT protein. Catch up right here.

Digital föräldragrupp för dig som har ett barn med juvenil Huntingtons sjukdom Har du ett barn med juvenil Huntingtons sjukdom? Välkommen att delta i en digital föräldragrupp för föräldrar till barn med sällsynta hälsotillstånd. I gruppen får du möjlighet att träffa andra föräldrar som, precis som du, har erfarenhet av att vara förälder till ett…

Inlägget Digital föräldragrupp! dök först upp på RHS Riksförbundet Huntingtons Sjukdom.

⏱️ 28 min read | Day1 of HD2026 is a wrap! From what human brains can teach us about HD, to HTT1a, somatic CAG expansion and the normal biology of HTT, today’s talks spanned the spectrum from fundamental biology to potential treatments.

There are so many things that people in the Huntington’s Community never talk about. Especially the Caregivers or Care Partners (whatever your choice of description may be.) You think you know how hard this journey into Caregiving is going to be, but until you actually live it, you have no clue. It’s easy for those on the outside looking in to give suggestions that they think are helpful but really aren’t. One of the biggest things a Caregiver won’t tell you about is the guilt. Guilt for...

aktualizácia 11.8.2026 Prelinea sa podelila o výsledky z placebo skupín s CHDI (Nadáciou ktorá financuje výskum HCH).  Takto sa využije aj vedecký potenciál ľudí, ktorý sa zúčastnili a ich účasť tak získa významnú pridanú hodnotu pre ďalší výskum. Originál článku tu. aktualizácia 19.5.2026 Žiadosť o schválenie Pridopidínu bola stiahnutá. EMA vyhodnotila liek vo všetkých skupinách ako …

Pridopidin Čítajte viac »

Onderzoekers van het Maastricht UMC+ onderzoeken of het ziekmakende eiwit bij de ziekte van Huntington betrouwbaar gemeten kan worden in traanvocht. Als dit lukt, kan dit in de toekomst een patiëntvriendelijk alternatief bieden voor de ingrijpende ruggenprik. Om de meetresultaten goed te kunnen vergelijken, zoekt het onderzoeksteam gezonde controlepersonen.

Clinical trial data can drive discovery long after a study ends. Prilenia donated placebo-arm data from 2 HD clinical trials to CHDI, a valuable resource for researchers to better understand placebo effects, HD progression and future trial design.

Ferrer and Prilenia are pleased to update you that the first participant has been randomized in the PRECISE-HD confirmatory Phase 3 study of pridopidine, an investigational medicinal product taken as an oral capsule twice daily, in Huntington’s disease (HD). This milestone marks the start of participant enrolment, with several US sites now active and additional sites in Canada, the EU and the UK set to follow later this year. PRECISE-HD is designed to further evaluate the efficacy and safety...

Each year, Huntington’s Australia holds its Walk 4 Hope. The national community event takes place at locations across...

Because of an amazing private donor, we are able to offer 10 full scholarships to attend Help 4 HD's annual Symposium for first-time attendees. Restrictions apply; please read carefully before applying. https://www.help4hd.org/events-1/full-scholarships-to-help-4-hds-annual-symposium-1

⏱️10min read | Roche’s decision to stop development of 2 HTT-lowering programmes is disappointing, but the story doesn’t end there. Years of research answered some key questions, raised many new ones, and will inform the next generation of HD trials.

July was a busy month for Huntington’s disease research and news, with both disappointing announcements and encouraging research....

Is It Better to Know What Your Partner’s Future Is? When your loved one is at risk for Huntington’s disease, the question of knowing the future takes on a new level of complexity. As a partner, you may wonder if learning your loved one’s genetic status will help you both prepare, or if it will cast a shadow over your relationship. Is it better to know what the future holds, or to live in uncertainty together? The Power of Shared Knowledge For many couples, having answers brings a measure of...

⏱️ 8 min read | July was a hard month for Huntington’s disease research, with Roche ending two HD programs. But the month also brought promising new tools, a new player in somatic expansion, and important work on eating and self-awareness in HD.

ATTENZIONE POSSIBILITA’ DI ERRORI Per garantire una diffusione rapida e capillare delle notizie relative alla ricerca sull’HD e agli aggiornamenti sulle sperimentazioni in corso, questo articolo è stato sintetizzato tramite Intelligenza Artificiale e non è stato  revisionato da un redattore umano. Per una consultazione più affidabile, si consiglia di fare riferimento alle versioni originale in […]

L'articolo Mangiare nella Malattia di Huntington: non è solo una questione di cibo sembra essere il primo su corea di huntington -AICH ROMA ONLUS -.

Veel mensen met de ziekte van Huntington vallen ongewenst af, zelfs als ze genoeg proberen te eten. Dit gewichtsverlies maakt hen zwakker en vermindert de kwaliteit van leven. Uit een nieuw Brits onderzoek blijkt dat de problemen rondom eten en gewichtsverlies heel complex zijn.

⏱️10 min read | Four years after announcing positive results in their trial of ANX005 (tanruprubart) for HD, Annexon has formally published the results. It’s safe, hits its target, and may have helped some participants – so what’s the holdup?

De impact van de ziekte van Huntington op jonge levens is enorm. Het is een genetische en progressieve aandoening die niet alleen het lichaam en de beweging aantast, maar ook cognitieve achteruitgang veroorzaakt.