HD Focus

Entenda os impactos da evolução da DH na condução de veículos e como planejar a transição para o banco do copiloto preservando a autonomia.

O post Até quando uma pessoa com DH pode continuar dirigindo? apareceu primeiro em ABH – Associação Brasil Huntington.

Prilenia and Ferrer Announce Initiation of PRECISE-HD (1)

The post Prilenia and Ferrer Announce Initiation of the Confirmatory PRECISE-HD Study of Pridopidine in Huntington’s Disease first appeared on Huntington's Disease Society of America.

⏱️8 min read | For the past 20 years, PET tracers have been a game-changer for Alzheimer’s disease, making it possible to see amyloid plaques in the brain without invasive procedures. So what about Huntington's?

De ziekte van Huntington is geen individuele aandoening, maar een gezinsziekte die het leven van partners, kinderen en andere naasten diepgaand beïnvloedt. Dat is de centrale conclusie uit de presentatie Blik op het gezin van Cathelijn van Baar en Maud Daemen. Van Baar lichtte de belangrijkste conclusies toe tijdens de netwerkdag van Huntington Nederland. “Goede zorg kan niet langer alleen gericht zijn op de patiënt, maar moet het hele gezinssysteem omvatten, omdat juist daar veel van de verborgen zorgvraag ligt.”

With the welcoming of the new financial year, Huntington’s Australia has sent out our 2026 Have Your Say...

PRECISE-HD (Pridopidine Phase 3 Study to Establish Clinical Impact and Safety in Huntington’s Disease (HD)) is designed to further evaluate the efficacy and safety of pridopidine, an oral investigational drug, on disease progression, functional capacity, motor function, cognition, speech and Quality of life -- Focused on generating the data to further support regulatory evaluation, PRECISE-HD will be undertaken in up to 75 sites globally, including the US, EU, UK and Canada. Recruitment has...

HDSA AWARDS THREE 2026 DONALD A. KING SUMMER RESEARCH FELLOWSHIPS   New York, NY (July 2, 2026) — The Huntington’s...

The post HDSA AWARDS THREE 2026 DONALD A. KING SUMMER RESEARCH FELLOWSHIPS first appeared on Huntington's Disease Society of America.

 Wat een bijzondere dag was het. Bekijk hier de terugblikvideo.

Farmaceut UniQure gaat de Amerikaanse toezichthouder FDA de komende maanden om versnelde goedkeuring vragen voor haar gentherapie AMT-130 tegen de ziekte van Huntington. De FDA heeft onverwacht zijn eis voor een volledig nieuw klinisch onderzoek laten vallen en stemt nu in met een analyse van lopende studies.

A decisão de não incorporar o medicamento ainda não é definitiva; a farmacêutica apresentou recurso administrativo, e o processo segue em aberto.

O post Teva recorre da decisão que negou a incorporação da deutetrabenazina no SUS apareceu primeiro em ABH – Associação Brasil Huntington.

Huntington’s Australia welcomes the first dedicated NDIS HD Planner Pathway for people living with Huntington’s disease (HD). The NDIS HD Planner Pathway includes improvements to the access and planning process...

Depois de 12 meses de tratamento, os participantes do estudo tiveram uma melhora singela, mas presente em todas as áreas avaliadas da escala clínica que mede a progressão da doença.

O post Um ano de SKY-0515: estudo demonstra sinais estáveis em quatro componentes de escala da doença de Huntington apareceu primeiro em ABH – Associação Brasil Huntington.

In this past quarter, we received a lot of news in the world of Huntington’s disease research. With encouraging trial results and...

⏱️ 6 min read | New 12-month data from Skyhawk’s SKY-0515 is in and all four measures that make up the cUHDRS are at or above baseline, beating expected natural decline. Plus, a first look at expanding US trial sites.

Teva Pharmaceuticals’ Austedo (deutetrabenazine) and its extended-release formulation, Austedo XR — approved to treat chorea, or involuntary movements, in people with Huntington’s disease — have functional and social benefits for both patients and their caregivers. That’s according to real-world data presented today by Debbi Fox-Davis, Teva‘s director of patient engagement and advocacy, and Hannah Roth, Teva’s medical science liaison, at the 41st Huntington’s Disease Society of America (HDSA)...

Geschreven door Michela Luciano, vertaald en bewerkt door Johan van Leipsig

Een kleinschalige studie suggereert dat spraakopnames via een smartphone een eenvoudige en minder belastende manier zijn om de ernst van de ziekte van Huntington (HD) te beoordelen.

⏱️ 10 min read | From the clinic, we heard from uniQure about their recent FDA meeting, a stem cell trial dosed its first participant, and Skyhawk shared data on SKY-0515. In the lab, the science of slowing HD at the DNA level keeps building.

Ariaan Baan was 35 jaar toen hij de diagnose Huntington kreeg. Hij werkte als predikant bij twee Groningse gemeentes. Dat werk heeft hij vijf jaar na zijn diagnose moeten opgeven. Toch haalt hij nog dagelijks kracht uit het geloof om hem te helpen omgaan met zijn ziekte.

Elizabeth (Liz) Porterfield MBE has joined the Board of Trustees at Scottish Huntington’s Association. The role is especially meaningful for […]