HD Focus

Scottish Huntington’s Association has launched its 2026 Scottish Huntington’s Association Tartan Tee-Off charity campaign. The charity is looking to partner with other organisations, including golf clubs and businesses, to host fundraising golf days across the country to raise much needed funds in support of families living with Huntington’s disease.

A new review from the University of Cambridge explores ocular biomarkers in HD, including retinal scans and eye movement tracking.

McDonald’s restaurants in Edinburgh have delivered a vital funding boost through their In The Community Foundation in support of families […]

Após indicadores seguros obtidos na fase 1 de estudos, o medicamento experimental entra em nova fase de testes para avaliar sua eficácia em centenas de pacientes em todo o mundo.

O post Skyhawk divulga resultados promissores do SKY-0515 e expande o estudo FALCON-HD para América Latina apareceu primeiro em ABH – Associação Brasil Huntington.

The power of associationism present for the first time at the ENROLL-HD LANCOS meeting – Written by Ruth Blanco, 15 February 2025 This February, we…

Daten met de ziekte van Huntington (HD) heeft Tanita Allen geleerd hoe snel mensen eerlijkheid verwarren met een waarschuwingslabel, zo schrijft ze in haar nieuwe blog.

Ik dacht altijd dat vroeg in het proces de waarheid vertellen het meest respectvol was wat ik kon doen. En ik geloof nog steeds in eerlijkheid. Maar ik heb geleerd dat eerlijkheid me niet beschermt tegen misverstanden. Soms maakt het me juist een projectiescherm voor de angsten van anderen. Daten is al kwetsbaar. Met een chronische, progressieve ziekte wordt die kwetsbaarheid verdiept en soms vergroot.

⏱️ 8 min read | Your brain is an advanced supercomputer. But in HD, a core processor starts to malfunction. A research group at UCLA has taken a close look to visualize the specific circuits going haywire – and how they look different in HD.

On Thursday, February 26, Chairman Rick Scott of the U.S. Senate Special Committee on Aging will convene a hearing entitled “From Regulator to Roadblock: How FDA Bureaucracy Stifles Innovation.” This hearing will explore how regulatory processes and evolving standards at the Food and Drug Administration (FDA) can unintentionally delay patient access to safe and effective therapies, particularly for individuals living with rare diseases. Members and expert witnesses will share the...

17.2.2026 – pôvodná správa Látka je cielená na zvýšenie hladiny FAN1 proteínu určeného na opravu DNA. Liek je na báze ASO a zatiaľ je v predklinickej fáze. Klinické testovanie by chceli začať v roku 2027.  Originál článku tu. Ďalší článok o tomto lieku tu.

Idag publicerades en artikel om Huntingtons sjukdom i Dagens Nyheter. Den beskriver hur samhället sviker familjer som är drabbade av Huntingtons sjukdom. Nedan finns ett utklipp av artikeln men hela artikeln finns att läsa på DN:s hemsida

Inlägget RHS i Dagens Nyheter idag! dök först upp på RHS Riksförbundet Huntingtons Sjukdom.

This May, for Huntington’s Disease (HD) Awareness Month, we’re proud to take part in the global #LightItUp4HD campaign....

⏱️ 7 min read | Living at risk for Huntington’s disease imposes a massive psychological burden. A small interview-style study of at risk 12 people dove into how these people cope day-to-day.

Aktualizácia 16.2.2026 Niečo o živote v riziku pre pochopenie.  Originál článku tu. Aktualizácia 16.8.2025 Niekedy si ľudia HCH neuvedomujú zmenu ktoré sa v ich stave dejú. Podľa najnovších zistení tento stav nemusí byť o tvrdohlavosti a odmietaní ale o fyzických zmenách na mozgu podľa MRI.  Originál článku tu. Aktualizácia 22.6.2025 Pri testovaní ľudí v skorom štádiu sa …

Život s HCH Čítajte viac »

Harness Therapeutics Nominates HRN001, a First-in-Class Drug Candidate for Huntington’s Disease and Establishes Clinical Advisory Board Cambridge, UK, 16 February 2026: Harness Therapeutics (‘Harness’), a biotechnology company unlocking previously undruggable […]

Siamo lieti di condividere  la newsletter di Enroll-HD – edizione dicembre 2025, ora disponibile anche in lingua italiana. Questa pubblicazione rappresenta un importante strumento di aggiornamento per pazienti, famiglie e caregiver, offrendo informazioni utili sulle attività del progetto Enroll-HD, sugli sviluppi della ricerca e sulle iniziative dedicate alla comunità coinvolta. L’obiettivo della traduzione è facilitare […]

L'articolo Disponibile in italiano la newsletter Enroll-HD – Edizione Dicembre 2025 sembra essere il primo su corea di huntington -AICH ROMA ONLUS -.