HD Focus: News Across the Globe

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.

Snart har du ett färskt nyhetsbrev i din mail om allt som är på gång. OBS! Titta i din skräpkorg om du inte hittar det. Nyheterna som vi skriver om finns länkade under aktuellt på hemsidan. Bläddra dig vidare nedåt så hittar du under detta inlägg information och länkar till både Nationellt möte, Utbildningsdagen, föreläsningarna…

Inlägget Missa inte vårt nyhetsbrev med det allra senaste publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Utbildningsdagen riktar sig framför allt till omvårdnadspersonal och anhöriga, men alla är välkomna. Vi diskuterar omvårdnad – lär känna igen svåra komplexa symtom, etiska dilemman, kommunikation, medicinering och anhörigperspektiv. Vi eftersträvar en samsyn för att säkerställa omvårdnadsbehovet för vår målgrupp oavsett var man bor i landet och var man får sin vård. Titta på alla…

Inlägget Titta på utbildningen ” Palliativ omvårdnad vid HS och demenssjukdomar” från 27 september publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Riksförbundet Huntingtons sjukdom bjuder in till: Nationellt möte, torsdag den 26 september- Nationellt möte med inbjudna föreläsare och professioner från huntingtonteamen runt om i landet, vilka bland annat talar om; aktuell forskning, omvårdnad, utredningen om högspecialiserad vård, Fysioterapi och Arvsfondsprojekt YTAN. Det kommer även att finnas utställare på plats. Titta på alla avsnitten från Nationellt…

Inlägget Titta på Nationellt möte från 26 september publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Since its inception in 2010, HDBuzz has existed with the financial support of non-profit organizations within the Huntington’s disease (HD) space. In our 14 years of service, we have never directly asked the HD community for donations. However, recently during a tenuous time in the existence of HDBuzz, we lost the support of one of our largest and longest standing backers. This seriously jeopardized the existence of HDBuzz. We want to ensure that this never happens again. So that HDBuzz will continue to exist and report science in plain language for the global HD community, we’re asking for your help.

Where does HDBuzz get funding?

Una delegazione della nostra Associazione ha partecipato al Congresso EHDN e Enroll-HD tenutosi a Strasburgo dal 12 al 14 settembre: con la Presidente Elisabetta Caletti, Cristina Zanoni Vicepresidente e Francesco Villa Tesoriere. La tre giorni francese è stata un’importante occasione di ritrovo per tutta la Comunità Huntington.   “Sono presente in EHDN dal 2012 anno […]

L'articolo Huntington Onlus al Congresso EHDN e Enroll-HD proviene da huntington-onlus.

EHDN  (European Huntington’s Disease Network) om forskningsuppdateringar och annat från dagarna. För er som skulle vilja besöka konferensens i Strasbourg digitalt nu i efterhand så finns här nu en sammanfattning av de viktigaste händelserna: TIPS! Titta lite extra på vår representant Anne ( Experiences from HD Family) som är på scen dag 1 och håller…

Inlägget Besök EHDN konferensen i Strasburg i efterhand publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Cambridge, UK, 2 October 2024 – LoQus23 Therapeutics Ltd (“LoQus23”), a private biotechnology company investigating small molecule drugs that could stop DNA instability and slow neurodegeneration in Huntington’s Disease, myotonic dystrophy […]