HD Focus

 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 »

The HDYO Congress 2025 brought together young people, families, researchers, and professionals from around the world for an unforgettable event dedicated to the Huntington’s Disease community. Over three inspiring days, […]

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…

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 […]

Aktualizácia z 26.3.2025 Wave prechádza do fázy II/III teda poslednej pred schválením lieku.Liek je selektívny a mutáciu ktorú potrebujú na zacielenie mutovaného HTT má 40% ľudí s HCH. V druhej časti štúdie pri optimálnej dávke dosiahli až 46% zníženie mutovaného HTT. Čo malo súvis s spomalením atrofie mozgu.Podľa najnovších zistení pri spomalení zmenšovania niektorých časí …

Wave – WVE-003 Čítajte viac »

Slaap is misschien niet het meest voor de hand liggende onderwerp als we aan Huntington denken. Toch brengen we allemaal vele uren per etmaal in bed door en vormt een goede nachtrust de basis van een goede dag. De Amerikaanse neuroloog Victor Sung deelt enkele tips die helpen bij een goede nachtrust.                                                                       

Slaap is essentieel voor de menselijke gezondheid en biedt het lichaam de kans om te herstellen terwijl de hersenen informatie verwerken. Gebrek aan slaap kan leiden tot stemmingsproblemen zoals prikkelbaarheid en moeilijkheden met cognitie of geheugen naast de fysieke belasting die chronische vermoeidheid veroorzaakt.

Uitdaging

“Costruire futuro, ripensare la malattia: riorientamento socio-culturale di fronte a una condizione emergenza” è il titolo del seminario tenutosi martedì 20 febbraio 2025 presso l’Università Cattolica del Sacro Cuore di Milano, organizzato dal Dipartimento di Sociologia e la Facoltà di Scienze della Formazione e moderato dal Professor Michele Fontefrancesco (qui la locandina) La partecipazione di Huntington Onlus Huntington Onlus ha […]

L'articolo Cura, stigma, malattia: Tavola rotonda in Università proviene da huntington-onlus.

Добрый день!5 апреля в 12.00 часов состоится Информационный (поликлинический) день для семей с болезнью Гентингтона.❗ОСТАЛОСЬ 2 МЕСТА❗На инфо дне вы получите бесплатные консультации у лучших специалистов в области изучения и… More »

The post Информационный ( поликлинический) день 5 апреля 2025 г. appeared first on Центр помощи пациентам с орфанными заболеваниями.

NfL je proteín vďaka ktorému je možné predikovať progresiu HCH. 14 ročná štúdia tohoto proteínu preukázala, že zvýšenia hladín tohoto proteínu sa objavujú pred začiatkom symptómov HCH.Samotný proteín sa nachádza v mozgových bunkách ktoré ho začnú vylučovať v prípade problémov a stresu. Takto uvoľnený proteín sa dostane do krvi a preto je možné ľahko zistiť …

NfL Čítajte viac »

Moving Forward Team Meeting in Prague at the HDYO Conference – Written by the Moving Forward team on 24th March 2025 Earlier this month, the Moving…

Aktualizácia 24.3.2025 Výsledky testovania II fázy by mali byť zverejnené v 2/4 tohoto roku. No PTC začalo jednať s americkým úradom pre kontrolu liekov na zrýchlenom procese schvaľovania ich lieku. Liek je neselektívny takže znižuje oba HTT proteíny v celom tele nakoľko je podávaný formou tablety. Hladiny NfL na nezvyšovali počas užívania tohoto lieku ako …

PTC 518 + úžasné novinky od PTC Therapeutics Čítajte viac »

Raising Voices: An Online Session for Young People Caring for Parents with Neurodegenerative Diseases – Written by the Moving Forward team on 12th March 2025…

Välkommen på stödgruppsmöte i Göteborg den 12 maj kl 18.00. Läs mer om programmet och anmälan här nedan. Hoppas vi ses!

Inlägget Stödgruppsmöte i Göteborg 12 maj publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

There are heroes who walk among us. In the Huntington’s disease (HD) community, some of those heroes are the leaders of Factor-H—a nonprofit organization dedicated to improving the lives of HD families in underserved communities by providing humanitarian aid, education, and advocacy. Huntington’s is an unrelentingly cruel disease that afflicts families with generation after generation of trauma, medical challenges, and overwhelming emotional, financial, and social burdens that can make even the simplest aspects of daily life a struggle.

What could make HD worse? Abject poverty so extreme that families are left utterly resourceless, living in tin-roofed huts with dirt floors without mattresses, electricity, or running water. This is the reality for some of the largest clusters of HD families in the world, located in South America—the same families that contributed to the research that discovered the gene that causes HD. Even still, every scientific advancement that the HD community hopes for and closely scrutinizes likely won’t make its way to these unimaginably vulnerable populations of people without help. That help is Factor-H.

Gratitude Day—Sunday, March 23rd—is a global initiative organized by Factor-H, celebrating the resilience and strength of Huntington’s disease (HD) families, particularly those in underserved communities—the same communities who have historically partnered with the medical and scientific community to advance research. In particular, the families from Venezuela, who did so much to help with our understanding of the disease.

It’s a day to reflect on the power of compassion, solidarity, and support, recognizing the contributions of caregivers, researchers, and advocates working to improve the lives of those affected by HD. For the HD community, Gratitude Day is an opportunity to amplify awareness, and inspire continued action toward a future with better care, resources, and ultimately, effective treatments, which must include families living in conditions of extreme vulnerability.

In honor of Gratitude Day, the HDBuzz editorial team interviewed Dr. Ignacio Muñoz-Sanjuán (aka Nacho), President and Founder of Factor-H, to learn more about their mission, help amplify their message and share in the meaning behind this inspiring day.

Factor-H

In the realm of healthcare, especially regarding neurological disorders like Huntington's Disease (HD), discussions about sexual health...

There are heroes who walk among us. In the Huntington’s disease (HD) community, some of those heroes are the leaders of Factor-H—a nonprofit organization dedicated to improving the lives of HD families in underserved communities by providing humanitarian aid, education, and advocacy. Huntington’s is an unrelentingly cruel disease that afflicts families with generation after generation […]

“Gratitude Day is a way to honor the collaboration of HD families with clinicians and scientists, which started with the efforts to identify the Huntington’s disease gene in the 1980s, […]

23. marec je dňom vďaky za spoluprácu rodín a profesionálov pri hľadaní lieku na HCH.   Sme partneri a podporujeme sa navzájom.Rodiny neustále ďakujú vedcom! Vedci ďakujú rodinám pri každej príležitosti. Ale tento deň je pre nás všetkých, aby sme uznali naše partnerstvo. Je to jedinečné! .Ak by niekto chcel pripojiť stačí sa od fotiť …

Deň vďaky za spoluprácu – Gratitude day Čítajte viac »

A keen amateur baker, Connie raised more than £1300 by teaming up with Pillow Partners, encouraged by her husband Holden […]