HD Focus

Naša spoločnosť sa chce pripojiť ku kampani týkajúcej sa povedomia o Huntingtonovej chorobe ktorú zastrešuje Kanadská asociácia.  Toľko rokov bola Huntingtonova choroba (HCH), udržiavaná v tajnosti, kvôli stigme a diskriminácii. Kampaň #LightItUp4HD je skvelou príležitosťou pre ľudí s HCH zvýšiť povedomie o HCH a nadviazať kontakty, získať podporu od svojich komunít a napredovať s hrdosťou …

Rozsvietiť svetlá pre HCH Čítajte viac »

⏱️8 min read | What does “good care” look like in Huntington’s Disease? A new Dutch study asked familial and professional caregivers, and uncovered how differently it’s experienced in practice.

ASSEMBLEIA GERAL ORDINÁRIA – Acesse o edital. A ABH – Associação Brasil Huntington, em cumprimento aos seus Estatutos, convoca seus associados e convida familiares, amigos, parceiros, colaboradores e a população em geral para participar da Assembleia Geral Ordinária a ser realizada: Dia: 23 de maio de 2026Horário: 14:00 h – Primeira Convocação14:30 h – Segunda […]

O post Edital de Convocação – Assembleia Geral Ordinária apareceu primeiro em ABH – Associação Brasil Huntington.

 “Je levert steeds een stukje in… maar je moet door.” Leven met Huntington is een voortdurend rouwproces, en tegelijk een verhaal van veerkracht.

Bekijk de volledige video van Lilian hier

  Zeldzaam, maar je staat niet alleen

⏱️ 6 min read | While the US regulatory path for AMT-130 remains complicated, uniQure announced plans to seek approval for its HD gene therapy in the UK. Here’s what that means, and what might be to come.

What is the NAD-HD study and what does it mean for you? – Written by the Moving Forward team on 6th May 2026 On 14 April,…

⏱️10 min read | PTC Therapeutics shared 2-year data for votoplam, a daily HTT-lowering pill. Stage 2 participants showed up to 52% slowing of disease progression. Here’s what the data show, what’s still missing, and the roll out of the Phase 3 trial.

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.

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 […]

⏱️ 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.

30 апреля 2026 г. Центром помощи пациентам с орфанными заболеваниями «Редкие люди» совместно с Российским центром неврологии и нейронаук была проведена онлайн научно-практическая конференция для врачей, посвященная болезни Гентингтона. Центральная… More »

The post «Повседневное функционирование при болезни Гентингтона: что влияет и как улучшить» appeared first on Центр помощи пациентам с орфанными заболеваниями.

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

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 […]

Kinderen stellen eerlijke vragen over een onbekende en ingrijpende ziekte

Met de start van Huntington’s Disease Awareness Month in mei vraagt de Vereniging van Huntington extra aandacht voor een ziekte die voor veel mensen nog onbekend is, maar een enorme impact heeft op het leven van patiënten en hun families.

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 […]