HD Focus

5 апреля в Москве в «Библиотеке- читальне им А.С. Пушкина» прошёл очередной поликлинический день для семей с болезнью Гентингтона. Программа реализуется при поддержке Фонда президентских грантов. Команда медицинских специалистов ответила… More »

The post Поликлинический-информационный день 5.04.2025 г. appeared first on Центр помощи пациентам с орфанными заболеваниями.

Imagine battling a disease that not only affects your body but also causes your mind to lose touch with reality, making it hard to see the world as it really is. This is the heartbreaking reality for many people living with Huntington’s disease (HD) who also experience symptoms of psychosis. Professor Clement Loy and his […]

5 апреля в Москве в «Библиотеке- читальне им А.С. Пушкина» прошёл очередной поликлинический день для семей с болезнью Гентингтона. Программа реализуется при поддержке Фонда президентских грантов. Команда медицинских специалистов ответила… More »

The post Информационный (поликлинический) день 5.04.2025 г. appeared first on Центр помощи пациентам с орфанными заболеваниями.

Understanding Caregiver Dynamics: A Conversation on Meeting Needs Finding the right caregiving support can be challenging, especially...

Nel concetto di rete come lavoro della nostra Associazione, c’è la scelta di impegnarsi per avvicinare tutte le persone coinvolte dall’Huntington. Praticando questo principio abbiamo accolto la proposta dell’EHA di aderire a Moving Forward.

L'articolo Questionario sulle esperienze e bisogni della comunità Huntington italiana proviene da huntington-onlus.

Two recent studies offer fresh insights into how antidepressants, often prescribed to help manage mood and anxiety, are prescribed in Huntington’s disease (HD) and might also influence cognitive decline. One study zooms in on medication use in HD, while the other takes a broader look at dementia and antidepressants. Together, they reveal a complex and […]

A APDH convida toda a comunidade Huntington portuguesa para uma conversa especial com Luís Aguilar, um jovem espanhol que cresceu numa família marcada pela doença de Huntington e que, com coragem e criatividade, transformou as suas vivências pessoais numa poderosa ferramenta de partilha e reflexão. Nesta sessão online, Luis irá contar-nos a sua história, abordando …

Sessão on-line Luis Aguilar Read More »

Emma har levt nära Huntingtons sjukdom sedan hon var nio år, och hennes starka, modiga berättelse berör djupt. Trots allt hon har gått igenom, har Emma valt att vara öppen för att hjälpa andra som går igenom samma sak. Genom sitt engagemang i Riksförbundet och vårt Avsfondsprojekt, YTAN och sina personliga erfarenheter sprider hon ljus…

Inlägget Rösta på Emma som Lyssnarnas Sommarvärd 2025 i P1 publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Over the past year, HDBuzz has been evolving, growing, and delivering on its mission—bringing clear, accessible, and accurate Huntington’s disease (HD) research news to families and researchers around the world. From major clinical trial updates to scientific breakthroughs, we’ve been at the forefront, translating complex science into clear, understandable insights. But as HD research advances, […]

Conforme os nossos estatutos realizou-se, dia 29 de março de 2025, pelas 14:30 horas na sede da APDH (Art.º 25º nº 2 alínea c), a Assembleia Geral Ordinária, com a seguinte ordem de trabalhos:1. Apreciação e votação do Relatório de Contas da Direção do ano de 2024, e parecer do Conselho Fiscal,2. Apresentação do relatório …

Março – 2025 Read More »

Living with Huntington’s Disease (HD) often feels like a series of quiet, and sometimes loud goodbyes. We say goodbye to the way our bodies used to move, to the stamina […]

Vi har roliga nyheter! Vi har tagit beslut att samköra vår Unga vuxna träff (som vanligtvis ligger på hösten) tillsammans med familjelägret i Hjo i sommar 26-29 juni. Oavsett om man anmäler sig till Familjeläger eller unga vuxna träffen så kommer man att kunna lyssna till samma föreläsare, men det kommer också att vara olika…

Inlägget Unga vuxna träff i Hjo i sommar! publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

March 2025 was packed with groundbreaking discoveries in Huntington’s disease (HD) research, and we’re here to bring you the biggest highlights! From the cutting-edge CRISPR delivery system RIDE, which could rewrite the playbook on gene editing, to major advances in drug development, biomarker breakthroughs, and fresh insights into HD biology, this month was a whirlwind […]

Välkomna på stödgruppsmöte i Helsingborg 26 maj kl 18-20.30. Läs mer om innehåll och anmälan här nedan.   Hoppas vi ses!  

Inlägget Stödgruppsmöte i Helsingborg 26 maj publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

In a recent HIPE conversation, we dove into the complex intersection of love, identity, and the impact of Huntington's Disease (HD) on...

 29 de março de 2025 (Sábado), às 14:00 horas na sede da APDH A vossa presença é fundamental no entanto, caso lhes seja completamente impossível  estar presente, por favor deleguem o voto num outro sócio, através da declaração que se anexa, devolvendo-a para a associação, por e-mail. Relembramos que cada sócio só pode representar um único outro sócio. Convocatoria Assembleia Geral Março2025.pdf …

 Assembleia Geral Ordinária Read More »

Imagine a tiny, microscopic surgeon moving through the body, making precise genetic repairs exactly where they’re needed. That’s the vision behind a groundbreaking new gene-editing delivery system called RIDE—Ribonucleoprotein Delivery—recently featured in Nature Nanotechnology. This system offers a novel way to deliver CRISPR, a powerful gene-editing tool, to specific cells in the body. Researchers have […]

A New Chapter Begins: The Moving Forward Project Officially Launches in Italy – Written by the Moving Forward Team on 24th March 2025 We are very…