HD Focus

Vi vänder oss till alla er berörda familjer med Huntingtons sjukdom, anhöriga, anlagsbärare och unga vuxna över 18 år. Syftet med mötet är att träffa andra personer i en liknande situation och få den senaste uppdateringen om Riksförbundet och om Huntingtons sjukdom. Anmälan sker till katarina.holmsten@huntington.se

Inlägget 14 mars – Välkommen på stödgruppsmöte i Helsingborg dök först upp på RHS Riksförbundet Huntingtons Sjukdom.

Gå in och lyssna på den nya podcasten om Huntingtons sjukdom som släpptes idag. Ni kan hitta den genom att klicka här eller i era bland annat Podcaster och Spotify. Ni hittar den genom att söka på Vetenskap och hälsa.

Inlägget Podd: Huntington – om jakten på behandling dök först upp på RHS Riksförbundet Huntingtons Sjukdom.

Kontoret är återigen öppet och ni är varmt välkomna in Om du behöver övrigt stöd kan du kontakta dessa stödlinjer:  Anhöriglinjen tfn: 0200-239 500 www.anhorigasriksforbund.se Jourhavande medmänniska tfn: 08-702 16 80. www.jourhavandemedmanniska.se Hjälplinjen tfn: 903 90 https://hjalplinjen.se/

Inlägget Kontoret är öppet dök först upp på RHS Riksförbundet Huntingtons Sjukdom.

Skyhawk Therapeutics shared results for SKY-0515, a drug designed to lower huntingtin. The drug appeared generally safe, with 60% reduction of huntingtin in blood at the highest dose tested. This data is an encouraging step as larger trials continue.

Aktualizácia 28.1.2025 Skyhawk zverejnil výsledky skupiny/cohorty 1C v prvej fáze ich štúdie po 9tich mesiacoch. došlo k zlepšeniu celkového hodnotenia pacientov. Bežne dôjde k poklesu počas 9 mesiacov o 0,73 bodu v cUHDRS stupnici. Ich liek naproti tomu zaznamenal zlepšenie o 0,64 bodu. Pri 9 mg dávke dosiahli zníženie mHTT o 62% a zároveň znížili proteín …

SKY-0515 – Skyhawk Therapeutics Čítajte viac »

Nine-month findings show mean improvement in Composite Unified Huntington’s Disease Rating Scale from baseline of +0.64 points, compared...

On January 22, Huntington’s disease organizations delivered two petitions to the FDA, demanding that the agency reverse its rollback on uniQure’s application for its HD gene therapy. In September, uniQure announced that its drug, AMT-130, had slowed the progression of HD by 75 percent over three years – a historic first. However, reflecting what critics saw as growing dysfunction under the Trump administration, the FDA abruptly switched gears regarding its agreed-to plan for considering...

Dear friends in the Huntington’s disease community, We’d like to share an update on ongoing research into SKY-0515, an investigational medicine being studied for Huntington’s disease (HD). A scientific press […]

New York, NY (January 26, 2026) — The Huntington’s Disease Society of America (HDSA), the nation’s leading nonprofit dedicated to...

The post Huntington’s Disease Society of America Welcomes Three New Members to its Board of Trustees first appeared on Huntington's Disease Society of America.

⏱️5 min read |The Huntington’s disease community’s unprecedented mobilization helped secure a high-priority FDA meeting to discuss the path forward for AMT-130.

Mais do que recursos, recebemos força e esperança de uma rede de apoio mútuo. Obrigado por estar conosco!

O post Agradecimento aos benfeitores da campanha de financiamento coletivo de 2025 apareceu primeiro em ABH – Associação Brasil Huntington.

De Vereniging van Huntington brengt allerlei informatiemateriaal uit om alle aspecten van de ziekte van Huntington onder de aandacht te brengen. Maar ook om mensen te helpen om te gaan met de gevolgen. Zo zijn er verschillende brochures in onze webwinkel, waaronder Psychosociale problematiek bij Huntington – Deel 1: partners en mantelzorgers.

Hoewel er veel bekend is over de medische en neurologische kenmerken van de ziekte van Huntington, blijft de impact op partners en mantelzorgers vaak onderbelicht. Toch heeft het samenleven met iemand met Huntington ingrijpende gevolgen voor het dagelijks leven, relaties, emoties en toekomstperspectief van naasten. Juist daarom heeft de Vereniging van Huntington deze brochure ontwikkeld.

⏱️6 min read | Most people with HD report sleep problems, & new research suggests sleep quality is linked to many aspects of living with the disease. Wearables tracked people with HD for a year & revealed better sleep & strength training might help.

January 20, 2026 Dear Huntington’s Disease Community, On January 9th, uniQure issued a press release announcing that we scheduled a Type A meeting with the U.S. Food and Drug Administration (FDA). The purpose of this meeting is to discuss the Biologics License Application (BLA) data package to support accelerated approval of AMT-130, uniQure’s investigational gene therapy in Huntington’s disease. We are encouraged that the FDA has accepted our request for a Type A meeting. In the interest of...

Before Huntington’s disease entered my life, I moved through the world at a pace that made sense for the life I thought I was building. I held onto the idea […]

The Struggles of Internal Chorea: Impact on Digestion and Swallowing Internal chorea, a movement disorder characterized by involuntary, unpredictable muscle movements, presents unique challenges for those affected—particularly when it comes to eating and digestion. While the most visible symptoms involve limb, trunk, and facial movements, chorea can also disrupt the delicate coordination required for effective chewing, swallowing, and digestion. Difficulties with Chewing and Moving Food...