HD Focus

Warsaw, November 19th, 2025. Dear members, As you might know, yesterday the European Huntington’s Disease Network (EHDN) developed a seminar about the topline results of uniQure, a pharmaceutical company that […]

Läs mer om studien i PDF nedan. Vill du veta mer? Om du är intresserad av att delta eller vill veta mer om projektet är du välkommen att lämna ditt telefonnummer till: isak.halling@skane.se Obs. Tänk på att inte dela någon personlig/känslig information i ditt e-postmeddelande, med anledning av sekretess. Skriv därför endast ditt telefonnummer så…

Inlägget Lund söker deltagare till forskningsstudie: The Social-HD Study. dök först upp på RHS Riksförbundet Huntingtons Sjukdom.

Tivemos a honra de estar entre os finalistas na categoria Doenças Raras, apresentando o nosso projeto "Roda de Conversa ABH – Huntington em Pauta".

O post ABH é finalista no Prêmio Humanizar a Saúde 2025 apareceu primeiro em ABH – Associação Brasil Huntington.

Wanneer de feestdagen dichterbij komen, valt mijn blik steeds vaker op iets dat ontbreekt: een lege stoel aan tafel, waar ooit een dierbare zat.

Scientists often use genetics, the study of DNA, to understand the cellular changes that cause disease. By comparing people’s DNA with their symptoms, they can pinpoint specific genetic differences, called variants, that influence the severity of a disease. Huntington’s disease (HD) is well-suited for genetic analysis because of its well-understood genetic roots – an expansion […]

FOR IMMEDIATE RELEASE Contact: Mynelly Perez Director of Marketing & Communications Huntington’s Disease Society of America (HDSA) mperez@hdsa.org | (212)...

The post Huntington’s Disease Society of America Welcomes Robert Shaw as Chief Development and Field Officer first appeared on Huntington's Disease Society of America.

Elin’s Journey with Huntington’s Disease – Written by the Moving Forward team on 17th November 2025 Hi! My name is Elin Berg, I’m 28 years old and I…

Het Regionaal Expertisecentrum Huntington houdt op 1 december een Huntington Café in Weert. Deze laagdrempelige bijeenkomst biedt mensen met de ziekte van Huntington én hun naasten de gelegenheid om samen te komen, ervaringen te delen en informatie te ontvangen over een relevant thema.

This festive season, Scottish Huntington’s Association is inviting choirs, singing groups, performers and workplaces across Scotland to take part in […]

Auteur: Tanita Allen, vertaald en bewerkt door Johan van Leipsig

Wanneer mensen horen dat Tanita Allen de ziekte van Huntington heeft, valt er vaak een lange stilte. Daarna volgt een blik die ze inmiddels maar al te goed kent: medelijden. Hun wenkbrauwen fronsen, hun stem wordt zachter en ze zoeken naar woorden van troost. Tanita vertelt hoe ze dit ervaart en wat ze graag anders zou zien.

Our bodies are experts at looking after our DNA and are continuously monitoring for any damage that needs to be repaired to keep us healthy. Parts of DNA that are very repetitive, like the sequence causing Huntington’s disease (HD), are very tricky to look after and our body can try and fix them but make […]

Op zaterdag 8 november kwamen in de bossen van Nunspeet ruim vijftig vrijwilligers en aspirant-vrijwilligers samen voor de jaarlijkse Kaderdag van de Vereniging van Huntington. In de inspirerende omgeving van hotel De Hoeve van Nunspeet stond ontmoeting, samenwerking en toekomstgericht denken centraal. 

A small study from Brazil tested whether stem cells from human dental pulp, the soft tissue inside teeth, could help people with Huntington’s disease (HD). The results hint at small improvements on some movement measures, but the study had few participants who were tracked over a short timeframe, and many questions remain that raise red […]

Partners Share Their HD Journeys – Written by the Moving Forward team on 19th October 2025 Last week, the Moving Forward team organised an online…

FDA Contacts: Emails OCOD@FDA.HHS.gov patientaffairs@fda.hhs.gov ombuds@oc.fda.gov Physical Address Food and Drug Administration Center for Biologics Evaluation and Research (CBER) 10903 New Hampshire Avenue Silver Spring, MD 20993-0002 Template One: Subject: Urgent: FDA Reconsider Accelerated Approval for uniQure’s AMT-130 Therapy in Huntington’s Disease   Dear FDA CBER - We face a critical moment in the fight against Huntington’s disease. The FDA’s recent hesitation in allowing uniQure to...

A terapia gênica da uniQure, que mostrou resultados históricos em setembro, enfrenta um novo obstáculo com o FDA, órgão regulatório dos EUA. A ABH explica o que isso significa.

O post Sinal fechado? Entenda o desafio regulatório que o AMT-130 enfrenta nos EUA apareceu primeiro em ABH – Associação Brasil Huntington.

De Vereniging van Huntington biedt op steeds meer manieren ondersteuning aan mensen die direct of indirect te maken hebben met de ziekte. Naast voorlichting, bijeenkomsten en contactdagen is er ook online een groeiende bron van informatie beschikbaar. In de webshop van de Vereniging is nu een nieuwe sectie toegevoegd: ‘familiair betrokkenen’, met twee gratis te downloaden artikelen van Cindy Kruijthof.

There are mornings when I wake up and my body feels like a stranger. Some days, the movements are gentle, barely a whisper under the surface. Other days, they arrive […]

Why do some people with intermediate CAG repeats, a genetic “gray zone” in Huntington’s disease, develop neurological symptoms while others do not? This article covers a recent study that tackled this question by looking for somatic expansion, which is a tiny changes in DNA, in individuals across various CAG repeat sizes. Using ultra-sensitive research technology […]