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News Across the Globe

Family serves up the perfect Big Mac-donation

Scotland World Cup 2026 Fundraising Campaign: The Tartan Army Kick-Off Supporting Scottish Huntington’s Association

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

HD治療薬の動向:2025年8月

日本ハンチントン病ネットワーク

ハンチントン病(HD)の新しい治療薬に関する臨床試験(治験を含む)は欧米を中心に進められており、毎年新たな報告が発表されています。ここでは、2025年2月に米国カリフォルニア州で開催された「第20回ハンチントン病治療薬カ […]

Mark’s emotional 100km journey in memory of his dad

Scotland World Cup 2026 Fundraising Campaign: The Tartan Army Kick-Off Supporting Scottish Huntington’s Association

When actor and businessman Mark Barrett signed up for an extreme 100km challenge he was already in training to make […]

A Window into the Eyes: Using Ocular Biomarkers to Track Progression in Huntington’s Disease

HDBuzz

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

2025年度関西交流会のお知らせ

日本ハンチントン病ネットワーク

11月29日(土)午後から新大阪駅周辺にて開催予定です。関西方面の皆さま、お待たせしました。遠方からの参加も大歓迎です。是非ご参加くださいね。詳細内容や申し込みは会員だよりであるプチ・ニューズレター53号をご覧ください。

Looking for a feel good factor that beats a hole in one?

Scotland World Cup 2026 Fundraising Campaign: The Tartan Army Kick-Off Supporting Scottish Huntington’s Association

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.

Skyhawk divulga resultados promissores do SKY-0515 e expande o estudo FALCON-HD para América Latina

ABH – Associação Brasil Huntington

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.

A Fault In The Supercomputer

HDBuzz

⏱️ 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.

De uitdagingen van daten met de ziekte van Huntington

Nieuws - Vereniging van Huntington

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.

The power of associationism present for the first time at the ENROLL-HD LANCOS meeting

Moving Forward

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…

“From Regulator to Roadblock: How FDA Bureaucracy Stifles Innovation.” The US Senate Special Committee on Aging will convene a hearing with the FDA. Submit your statement!

Help 4 HD International

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...

EHDN Clinical Research Congress 2026

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Harness Therapeutics HRN001 Press Release

News - Huntington's Disease Society of America

Harness Therapeutics – HRN001

Spoločnosť pre pomoc pri Huntingtonovej chorobe

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.

HARNESS Therapeutics: FAN1 Candidate selection Patient group Q&A

News - Huntington's Disease Society of America

Harness Therapeutics Nominates HRN001 Drug Candidate for HD and Launches Clinical Advisory Board

Research – International Huntington Association

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 […]

Light It Up 4 HD

Huntington's Australia

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

Split Between Two Worlds: The Psychological Challenges for People at Risk of Huntington’s Disease

Enroll

⏱️ 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.

RHS i Dagens Nyheter idag!

RHS Riksförbundet Huntingtons Sjukdom

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.

Život s HCH

Spoločnosť pre pomoc pri Huntingtonovej chorobe

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 …

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