HD Focus

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.

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?

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 […]

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 […]

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.

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 -.

Missa inte detta webinar som vi på RHS gör i samarbete med European Huntington Associations projekt Moving Forward och Ytan för unga. Moving Forward-teamet är värd för denna online-session för den svenska HS-communityn med fokus på genetisk testning. 6 november kl 18.00 på zoom Vi har bjudit in tre personer med olika erfarenheter av genetisk…

Inlägget Webinar om genetisk testning 6/11 kl 18.00 publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Vi är glada att kunna meddela att boken Livable Lives nu finns tillgänglig på Amazon över hela världen! Författaren Christy Dearien lärde sig först namnet på den sjukdom som har drabbat hennes familj i generationer när hennes bror diagnostiserades med Huntingtons sjukdom – en sällsynt och progressiv genetisk sjukdom med en lång lista av fysiska,…

Inlägget Ny bok om Huntingtons sjukdom! publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

SRDEČNĚ VÁS ZVEME NA HDYO MEZINÁRODNÍ KONGRES Srdečně zveme všechny mladé dospělé z rodin s Huntingtonovou chorobou namezinárodní kongres HDYO organizace zabývající se mladými lidmi z rodin s Huntingtonovou chorobou na mezinárodní kongres, který se uskuteční jižpříští rok v Praze.Kongres proběhne v březnu příštího roku od 14.3. do 16.3.2025 v Clarion Congress Hotelu a je …

HDYO medzinárodný kongres v Prahe – 14. – 16. marca 2025 Čítajte viac »

We’re excited to announce that the 2024 HDBuzz Prize opened this summer, seeking to find effective communicators to help us break down the latest and greatest Huntington’s disease research! This fall (or autumn, if you’re feeling fancy, or just British to be honest) we’ll be bringing you articles written by the selected prize winners, who bring a fresh voice to HDBuzz. Read on to learn about the who, why, what, when, where, and how of the 2024 competition.

Who and why

The HDBuzz Prize sought to diversify the voices that bring you content on HDBuzz. Huntington’s disease (HD) researchers come from many different scientific backgrounds with varied training, and they don’t all interpret data in exactly the same way. Having multiple viewpoints represented across our writers ensures that HD families are getting content that spans what the HD field is thinking.

The HDBuzz prize was open to anyone with an active involvement in any aspect of HD-related research. Our goal was to find young scientists with a gift for communicating research news clearly and imaginatively.