HD Focus

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 […]

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.

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.

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 »

日時：2024年12月7日（土）　13：30～16：30場所：新大阪駅近辺の会議室 ＊詳細は会員向けニュースレターをご覧いただくか、事務局メール　jhdn2000@jhdn.org までお問い合わせください。 プログラム […]

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.

Alyssa’s journey with Huntington’s disease (HD) began at home. Her mother has HD, and before that, her grandfather...

There has been a lot of buzz in the Huntington’s disease (HD) space recently with multiple updates from companies testing many different drugs in the clinic. As these drugs move closer to seeking approval from the regulators, this has raised some questions. Why are some trials held in certain countries and not others? What does it matter if a company applies to the European or US regulators? How does a drug really move from being tested in a lab to being approved for sale on pharmacy shelves? We spoke with Cristina Sampaio, MD, Chief Medical Officer at the CHDI Foundation and former longtime member of CHMP, a committee that evaluates applications to the European Medicines Agency (EMA) for new drugs to be approved to be sold in the European Union (EU). Here, we get into the nitty gritty of drug regulation and find some answers to these important questions.

Getting a drug to market

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 har pågående eller redan avslutade kliniska försök inom forskning för Huntingtons sjukdom. Prilenia,…

Inlägget Webinar om forskningsuppdateringar med Åsa Petersén 23/10 kl 18.00 publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

The 2024 Annual General Meeting of Huntington’s Australia will be held at 5.30pm (AEST) on Friday 8 November...

Moving Forward Updates Presented by Maria Linné at the Swedish National HD Meeting – Written by the Moving Forward team on 7th October 2024 At the…

Scientists searching for new ways to stop Huntington’s disease (HD) have focused in on the repeating C-A-G letters of genetic code that cause the disease. That’s because the exact way these C-A-G letters repeat may have a big impact on when and whether someone develops HD. A group in Boston led by Dr. Jong-Min Lee recently applied a cutting-edge technology to try to change the letters of the C-A-G repeat in cells grown in a dish and mice that model HD. Were they successful? And what could this mean for future therapeutic approaches?

Three repeating letters – and an interruption to the repeat

The genetic code of every living organism is made up of 4 letters – C, A, G, and T. They’re combined in different ways to make every gene in our body, like letters on each page of a book. That’s a lot of diversity for just 4 letters!
HD is caused by a stretch of repeating C-A-G letters in the huntingtin gene – like three letters repeated on one specific page of the book. People who develop HD are born with 36 or more CAG repeats, one after the other at least 36 times, like this on the page: …CAG CAG CAG CAG CAG…

EHDN & Enroll-HD Strasbourg 2024 | Sep 12-14 EHDN & Enroll-HD 2024 was held September 12-14 in Strasbourg, France, an event that combined the biennial EHDN Plenary Meeting and the Enroll-HD Congress into a joint meeting. Conference participants had the opportunity to learn about the latest advances in basic, translational and clinical HD research, especially […]

EHDN & Enroll-HD Strasbourg 2024 | Sep 12-14 EHDN & Enroll-HD 2024 was held September 12-14 in Strasbourg, France, an event that combined the biennial EHDN Plenary Meeting and the Enroll-HD Congress into a joint meeting. Conference participants had the opportunity to learn about the latest advances in basic, translational and clinical HD research, especially […]

Här har vi samlat massor av intressant material att lyssna och titta på. I september hölls en stor forskningskonferens i Strasbourg. Lyssna på Anne-Elisabeth Saldarriga Vélez Magnussons, Sverige/Columbia, fina invigningspresentation. Tidigare i år arrangerade EHA, European Huntington Association ett webbinar om läkemedelsföretaget Prilenias forskning som utförts på substansen Pridopidine. Lyssna på webbinaret. Prilenia filing for…

Inlägget Missa inte att läsa nyhetsbrevet med de allra senaste nyheterna! publicerades först på RHS Riksförbundet Huntingtons Sjukdom.