HD Focus

News Across the Globe

Spark ignited: first HD patient dosed in new Roche gene therapy trial

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Spark Therapeutics, recently integrated into Roche Pharmaceuticals, has been working on an HD gene therapy. It’s delivered via a one-time brain surgery and is designed to lower levels of the huntingtin protein. A (very) small safety study has recently begun, and so far, one brave individual has received this experimental therapy, known as RG6662 (or […]
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Поликлинический день: без преград и расстояний!

Центр помощи пациентам с орфанными заболеваниями

Почти четыре тысячи километров преодолели пациенты из Бурятии, чтобы приехать в наш центр. Это означает, что наше дело не знает преград и расстояний! И мы выполняем важную работу. В этом… More »

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The latest volume of HD genetics research reveals new gems but also mysteries

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The latest instalment in a series of big studies to understand the genetics of Huntington disease (HD) just hit the shelves. These studies have focused on how small changes in the genetic letters of a person with HD can impact when they develop symptoms of the disease. The previous instalments in this series have been […]
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Subsidie voor samenwerking met mantelzorgorganisaties

Nieuws - Vereniging van Huntington

Voordat Cindy Kruijthof de Vereniging kwam versterken, nam ze het initiatief voor een subsidie om mantelzorgorganisaties intensiever te verbinden met de Vereniging van Huntington. Op haar eerste werkdag werd de subsidie toegekend. Maar waar gaat die precies over?

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Quali sono i veri bisogni della comunità italiana?

huntington-onlus

Vi aspettiamo mercoledì 25 giugno alle ore 18.00 al webinar “Ascoltare i bisogni della comunità italiana” nel corso del quale saranno presentati i risultati del questionario sulle esperienze e i bisogni di familiari e caregiver.

L'articolo Quali sono i veri bisogni della comunità italiana? proviene da huntington-onlus.

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When a Short Fuse Becomes a Storm: Understanding Irritability in Huntington’s Disease

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We all have days when we feel irritable, like when you’re stuck in traffic, or someone cuts in line at the grocery store. But for people living with Huntington’s disease (HD), irritability isn’t just a passing mood. It can feel like a thunderstorm that arrives suddenly, often without warning, and affects not only the person […]
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Practicing Mindfulness with HD: Learning to Be Here Now

Be Empowered by Tanita – International Huntington Association

Living with Huntington’s Disease has taught me many things, but one of the most important lessons has been this: presence is a practice. Before my diagnosis, I didn’t give much […]
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Roche-Spark HD Community Letter

News - Huntington's Disease Society of America

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Leven met Huntington: betekenis vinden in het moment

Nieuws - Vereniging van Huntington

Soms voelt het leven met de ziekte van Huntington als proberen een vlinder te vangen in een storm. De symptomen (chorea, vermoeidheid, stemmingswisselingen en vergeetachtigheid) lijken de fragiele momenten van geluk telkens weer weg te blazen. Toch lukt het de Amerikaanse Huntingtonpatiënt Tanita Allen om steeds opnieuw de schoonheid in het alledaagse te vinden. “Ik heb geleerd om vreugde te creëren, zelfs in het kleinste gebaar.”

De ziekte van Huntington is een progressieve, erfelijke hersenaandoening die zowel het cognitieve, motorische als psychische functioneren aantast. Leven met Huntington betekent langzaam afscheid nemen van zekerheden, toekomstbeelden en vaak ook van zelfstandigheid. Maar het betekent niet dat het leven zijn betekenis verliest.

Van controle naar overgave

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Inside the Brain’s Theme Park: How Huntington’s Disease Disrupts the Emotion Coaster

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Welcome to Brainland, the bustling, 24/7 theme park in your head. There’s Memory Maze, Logic Log Flume, and of course, the Emotion Coaster, where your brain races through tracks themed around happiness, sadness, and anger. However, for some people who carry the gene for Huntington’s disease (HD), some of these rides start acting up long […]
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Добрый день!

Центр помощи пациентам с орфанными заболеваниями

21 июня в 12.00 часов состоится Информационный (поликлинический) день для семей с болезнью Гентингтона.На инфо дне вы получите бесплатные консультации у лучших специалистов в области изучения и лечения болезни Гентингтона:… More »

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“I cried at the start, while I was running, and at the end – it was 13 miles of emotion” – Tammy

Global response to When Bob Dylan met Woody Guthrie - Scottish Huntington's Association

Every step of her first ever half-marathon, and knowing it was in support of Scottish Huntington’s Association, was loaded with […]
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“I cried at the start, while I was running, and atthe end  – it was 13 miles of emotion” – Tammy

“I cried at the start, while I was running, and atthe end  – it was 13 miles of emotion” - Tammy - Scottish Huntington's Association

Every step of her first ever half-marathon, and knowing it was in support of Scottish Huntington’s Association, was loaded with […]
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Raising £50,000 to help Huntington’s families is no small potatoes!

Global response to When Bob Dylan met Woody Guthrie - Scottish Huntington's Association

From ‘tattie shed’ dances to abseils; Santa tractor runs to a ladies’ day, Fiona Gray and her family have raised […]
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HA Highlights: Winter Edition

Huntington Australia

Welcome to the Winter edition of HA Highlights, Huntington’s Australia’s quarterly newsletter. In this issue: Your support continues...
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Школа в Воронеже 7 июня 2025 г.

Центр помощи пациентам с орфанными заболеваниями

В душевной и теплой обстановке прошла в Воронеже 7 июня  Школа здоровья для семей с болезнью Гентингтона. В этом городе, это вторая встреча наших больных с командой «Редких Людей». Мероприятие … More »

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One Disease, Many Paths: How Brain Wiring Shapes Huntington’s Symptoms

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Huntington’s disease (HD) is caused by a single genetic mutation, yet people with HD can experience vastly different symptoms – from movement issues to emotional struggles. A new study dives into brain connectivity to explore why that might be. Using MRI scans and thinking, movement, and behavioral tests, researchers identified two major clinical patterns and […]
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AMT 130 – aktualizované

Spoločnosť pre pomoc pri Huntingtonovej chorobe

Aktualizácia 7.6.2024 UniQure budúci rok požiada o schválenie lieku v zrýchlenom konaní čo by znamenalo, že bude za 6 mesiacov po podaní dostupný. Všetky výsledky z 3 ročného sledovania by mali byť dostupné tento rok júl – september. Originál článku tu. ďalší článok z inej www stránky tu. Aktualizácia 11.12.2024 UniQure požiadalo FDA o zrýchlený postup pri schvaľovaní …

AMT 130 – aktualizované Čítajte viac »

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Together for a Better Future: Moving Forward Launches in Czechia

Moving Forward

Together for a Better Future: Moving Forward Launches in Czechia – Written by the Moving Forward team on 3rd June 2025 We are excited to announce…
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An Evening of Honest Stories – Living at risk of HD in Norway

Moving Forward

An Evening of Honest Stories – Living at risk of HD in Norway – Written by the Moving Forward team on 3rd June 2025 Last week,…
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