HD Focus

V správach počúvame o reformách invalidity, ale aká je realita nás, rodín s Huntingtonovou chorobou?​V poslednej dobe sa v médiách často rozoberá téma PN-iek a prehodnocovania invalidity.Ako sa však na tieto debaty máme pozerať my, ktorí s touto ťažkou diagnózou bojujeme v priamom prenose celé desaťročia?​Invalidný dôchodok by nemal byť len symbolickou dávkou, ale spravodlivým …

Keď nás systém nevidí Čítajte viac »

HDSA Marks 34 Years of Huntington’s Disease Awareness Month This May  Nationwide events, community storytelling, proclamations, and landmarks lighting up...

The post HDSA Marks 34 Years of Huntington’s Disease Awareness Month This May first appeared on Huntington's Disease Society of America.

<p>The post HDSA Marks 34 Years of Huntington’s Disease Awareness Month This May first appeared on Huntington's Disease Society of America.</p>

⏱️ 8 min read | April 2026 showed us a toxic HTT fragment is center stage in mouse research, CRISPR is showing promise in mouse studies, AI and wearables move closer to the clinic, and 2 studies shine a light on the weight carried by HD caregivers.

A global awareness and engagement campaign for Huntington’s Disease launches this May The European Huntington Association (EHA) and the International Huntington Association (IHA) are joining forces again, launching a joint […]

May is Huntington’s Disease Awareness Month – a time to increase understanding, educate, amplify voices, and bring communities together in […]

We have received an interesting update from the pharmaceutical company Novartis about the medicine they currently are testing for Huntington’s Disease.   Do you remember the study named PIVOT-HD done a […]

May is Huntington’s Disease Awareness Month – a time to increase understanding, educate, amplify voices, and bring communities together in […]

As part of our work to build understanding and spread the word during Huntington’s Disease Awareness Month, we are proud […]

We are so delighted to share that on 27 March 2026, a significant step forward was taken for the Huntington’s Disease (HD) community in the Arab region. Representatives from several […]

Building Connections The First Francophone Youth Day – Written by the Moving Forward team on 28th April 2025 On April 25, the Association Huntington France (AHF)…

Email us, if you would like to participate! Katrina@Help4HD.org To submit a video on any of the above topics, please reach out! We can interview you, or you can send in a video. Here is a link to set up a time for video recording: Registration Form | Help 4 HD Internatio Click the link below to receive a #Help4HDSwag box for HD Awareness Month 2026 To receive a Help 4 HD ~ HD Awareness box, please click here: Registration Form | Help 4 HD Internatio

Lördag den 30:e maj är ni varmt välkomna till Stockholm för stödgruppsmöte.  Det är till för alla er berörda familjer med Huntingtons sjukdom, anhöriga, anlagsbärare och unga vuxna över 18 år. Syftet med mötet är att träffa andra personer i en liknade situation och få den senaste uppdateringen om Riksförbundet och om Huntingtons sjukdom. Anmäl…

Inlägget 30 Maj – Välkommen på stödgruppsmöte dök först upp på RHS Riksförbundet Huntingtons Sjukdom.

⏱️ 10 min read | The Total Functional Capacity score has been used in Huntington’s disease research for decades. Here’s what it measures, what it misses, & why it’s at the center of an anticipated clinical trial.

Huntington’s Australia supports strong, sustainable NDIS reform. But reforms must reflect the reality of progressive neurological conditions like...

Il giornale Gemelli Informa, organo ufficiale del Policlinico Agostino Gemelli, ha dato rilievo al Premio Giovanni Bellocchio 2025, assegnato da AICH Roma ODV alla Dott.ssa Maria Rita Lo Monaco e al Dott. Diego Ricciardi per il loro impegno nella cura della Malattia di Huntington. La pubblicazione da parte del Gemelli rappresenta un riconoscimento importante non solo per i professionisti premiati, ma […]

L'articolo Premio Giovanni Bellocchio 2025: il riconoscimento AICH Roma ODV sul giornale del Gemelli sembra essere il primo su corea di huntington -AICH ROMA ONLUS -.

The International Huntington Association (IHA) is pleased to announce that our team is growing. We are delighted to welcome Isabel Vermelho, Jarelys Lopez, and Simen Kindervaag, who bring valuable expertise […]

Webinar 5/5 18:00 Att testa sig – vägen till ett besked Välkomna att delta på ett inspirerande webinar med fokus på testprocessen för Huntingtons sjukdom. Webinariet kommer bestå av en genetisk vägledare som berättar om sitt arbete och ger kunskap om hur testningsprocessen kan gå till, steg för steg. Samt 2 unga vuxna som kommer…

Inlägget Webinarium 5 maj – Att testa sig- vägen till ett besked dök först upp på RHS Riksförbundet Huntingtons Sjukdom.

“Only Together Can We Move Forward” Moving Forward Presented to the Polish HD Community – Written by the Moving Forward team on 23rd April 2026 At…

⏱️5 min read | Apathy in HD isn’t just “not caring.” It can affect relationships, routines, and emotional connection. A small study of caregivers reveals the heavy toll of apathy and the value of safe spaces to share experiences.