HD Focus

Descubre la Historia de la Enfermedad de Huntington

La entrada ¡Descubre la historia detrás de la Enfermedad de Huntington! se publicó primero en .

The Huntington Study Group (HSG) is a clinical research network focused on accelerating treatments for Huntington’s disease (HD). This year, the annual conference is being held in Cincinnati, where clinicians, clinical coordinators, social workers, researchers, and pharmaceutical companies are all gathered to share research updates and exchange ideas. HDBuzz is attending the meeting, live tweeting scientific updates as they happen. For those who couldn’t catch our live updates, we’ve compiled our tweets into a summary. Read on to learn what happened on Day 1 of #HSG2024!

Welcome to HSG 2024!

HSG leadership is kicking things off with a series of intros and brief updates about the meeting agenda and the future of the organization. Stay tuned today as well as Friday and Saturday as we share updates on clinical trials and content from sessions on genetic therapy and innovative drug development.

MyHDStory

30 ноября в Оренбурге состоится Школа здоровья для людей с болезнью Гентингтона и их родственников.Помимо новой информации о заболевании, вы сможете получить бесплатные индивидуальные консультации от лучших российских специалистов.В программе… More »

The post Школа здоровья в Оренбурге appeared first on Центр помощи пациентам с орфанными заболеваниями.

Aunque en los artículos anteriores hemos abordado las distintas opciones disponibles para tener una descendencia libre de la EH, en muchas ocasiones, las familias afrontan su diagnóstico cuando ya tienen […]

La entrada ¿Cómo y por qué hablar con los hij@s sobre la Enfermedad de Huntington? se publicó primero en .

Hoe ga je om met een eventuele kinderwens als jij of je partner de ziekte van Huntington hebben? Laat je je testen of juist niet? Kun je zwanger worden van een gezonde baby? Deze vragen en nog veel meer kwamen aan de orde tijdens het webinar op 30 oktober jongstleden dat het Maastricht UMC organiseerde over het onderwerp.

Tijdens het gesprek ging Kirsten Paulus in gesprek met haar tafelgasten Mayke Oosterloo (neuroloog), Malou Heijligers (klinisch geneticus) en de familie Becks die uitgebreid vertelden over hun pad naar een succesvolle zwangerschap en wat daar allemaal bij kwam kijken.

Het webinar is hier terug te kijken

In een nieuwe podcastserie van Mijzo over de ziekte van Huntington komen allerlei facetten van de aandoening aan bod. De eerste vraag die bij veel mensen opkomt als ze het woord ‘Huntington’ horen is ‘Wat is de ziekte van Huntington eigenlijk?’. In deze eerste aflevering hoor je het antwoord.

Gespreksleider Eva van der Veer en casemanager bij Mijzo Ilse van Antwerpen gaan hierover namelijk in gesprek met Rob Haselberg. Rob is bestuurslid bij de Vereniging van Huntington, komt uit een Huntingtonfamilie, is zelf gendrager en doet als wetenschapper onderzoek naar een medicijn. Hij vertelt er in een klein half uur alles over.

Je vindt de aflevering hier.

For 57 years, HDSA has been dedicated to improving the lives of everyone affected by Huntington’s disease and their families....

The post Championing Hope: HDSA’s Unwavering Commitment to Huntington’s Disease Families first appeared on Huntington's Disease Society of America.

People with Huntington’s disease (HD) may develop a number of symptoms which can be identified by other people. These symptoms include uncontrollable muscle movements, difficulty with swallowing, and struggling to move around. These symptoms are often the focus for many research projects because they are easier to recognise for other people, as problems that people […]

Nu finns det även möjlighet att titta på webinaret i efterhand. Klicka här Följ med på kommande webbinarium, arrangerat av European Huntington Association (EHA) om den senaste utvecklingen inom pågående kliniska prövningar, modererat av professor Åsa Petersén, HS-kliniker och forskare, som startar sessionen med en introduktion. Det kommer att finnas representanter från de företag som…

Inlägget Titta på webinar om forskningsuppdateringar i efterhand publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

People with Huntington’s disease (HD) may develop a number of symptoms which can be identified by other people. These symptoms include uncontrollable muscle movements, difficulty with swallowing, and struggling to move around. These symptoms are often the focus for many research projects because they are easier to recognise for other people, as problems that people with HD can face. However, what about social struggles people with HD may have, which are not as obvious to other people? Scientists are now beginning to investigate these less obvious effects of HD because there is an increasing awareness of how much these can impact an individual and their quality of life.

The missing link – a connection between quality of life and social skills?

Pomôžte EFNA získať viac priaznivcov pre MEP Záujmovú skupinu poslancov pre zdravie mozgu a neurologické ochorenia!  KĽÚČOVÁ SPRÁVA 1.     Neurologické ochorenia ako priorita : Neurologické ochorenia sú najčastejšími, invalidiuálnymi a finančne nákladnými neprenosnými chorobami v EÚ, čo si vyžaduje naliehavú prioritu neurologickú starostlivosť a starostlivosť zdravia mozgu. 2.     Naliehavá potreba výskumu a prístupu : Existuje …

Pomôžte EFNA získať viac priaznivcov pre MEP v EU parlamente Čítajte viac »

1, Počúvať otvoreným srdcom nie len ušami. Aj keď majú ľudia s HD často problém s vyjadrovaním, či hľadaním správnych slov je dôležité s nimi hovoriť a počúvať ich. 2, Získanie informácii o HCH Nemusíte sa stať odborníkmi, ale čím viac budete vedieť tým lepšie ich pochopíte. 3, Ponúknite praktickú pomoc aj keď o ňu …

7 spôsobov ako podporiť priateľa s Huntingtonovou chorobou. Čítajte viac »

Huntington’s disease (HD) is a progressive brain disease that typically starts to show symptoms between the ages of 30 to 50, when people are in the prime of life. It’s also heritable, meaning anyone who has a parent with HD has a 50% chance of getting it. HD has historically been thought of as more common among those of White ancestry, but new data challenges this, suggesting comparable rates in Black individuals. Racial and ethnic health inequalities are well documented in North America, with Black and Latino individuals found to be less likely to receive neurological care, even when socioeconomic and insurance payer factors are controlled for. How, then, does this affect HD gene carriers?

Delayed diagnosis for Black people living with HD in North America

Until now, questions around racial health disparities in HD have received little attention, but a new study from Adys Mendizabal and colleagues from UCLA has begun to address this.

Adys and her team explored racial disparities in HD care by looking at data from over 4,000 North American HD gene carriers in the ENROLL-HD database.

Huntington’s disease (HD) is a progressive brain disease that typically starts to show symptoms between the ages of 30 to 50, when people are in the prime of life. It’s also heritable, meaning anyone who has a parent with HD has a 50% chance of getting it. HD has historically been thought of as more […]

Il 23 novembre prossimo avrà luogo il nostro secondo convegno annuale presso la Sala Mediateca, in Via Nomentana 52, sede della nostra associazione. Le ricerche internazionali sulla malattia proseguono attivamente e, oltre a definire specifici settori di interesse, ci offrono informazioni importanti e utili per la cura e l’assistenza dei pazienti. La medicina moderna ci […]

L'articolo Tutela dei diritti e migliore qualità di vita: dalla ricerca indicazioni per il benessere dei pazienti con MH sembra essere il primo su corea di huntington -AICH ROMA ONLUS -.