HD Focus: News Across the Globe

The Huntington’s disease (HD) community received the news on November 20, 2024 that Sage Therapeutics would be halting the development of their drug dalzanemdor (previously SAGE-718) for HD. Sage had hoped that dalzenemdor would work to improve thinking problems experienced by people with HD and had recent setbacks with the same drug for other diseases. […]

A recent study published in Nature Medicine, looked at how common certain genetic diseases are within the population. The diseases they looked at are referred to as repeat expansion diseases and include Huntington’s disease (HD). The researchers found that the genetic traits which underlie these diseases are more common than previously calculated. In this article, […]

Online session with the highlights of the EHDN 2024 Conference for the Norwegian HD Families – Written by the Moving Forward team on 14th October 2024…

We are excited to share Huntington’s Australia’s Annual Report 2024. From our advocacy efforts to community support and...

“This illness splits families apart or keeps them together. There is no middle ground with it.” For Connie Daly, those […]

Online Session ”One Disease, Multiple Stories”: Personal Journeys Through HD Genetic Testing in Sweden – Written by the Moving Forward team on 14th October 2024 On…

We’re back for the 3rd and final day of the Huntington Study Group (HSG) Conference. You can also read updates from day1 and day 2. They saved the best for last - family day! Follow along for our last day of HSG!

Demystifying research

Family Day is opening with a talk from Dr. Martha Nance, a neurologist from the University of Minnesota. This “Demystifying Research” session will walk through the basics of research studies, participation, and how science leads to treatments. She reminds us of the benefits and challenges of working on HD research. For example, it’s caused by a single gene and has a wonderful, engaged participant community, but it’s rare, complex, and affects the brain.

Now Martha is revisiting the basics of genetics, how our genes are composed of a letter code that we represent with the letters A, C, T, and G. HD is caused by a change to a single gene called huntingtin, abbreviated HTT.

We’re back for Day two of the 2024 Huntington Study Group (HSG) Conference! If you haven't yet read updates from day 1, you can check those out here. The morning of day 2 is opening with several talks on contemporary clinical challenges in HD.

Palliative care - an extra layer of support

Up first in this session is Dr. Steven Pantilat from the University of California San Francisco, who is an expert in palliative care. Palliative care is medical care focused on improving the quality of life for someone living with a serious illness, like HD.

One challenge that Steven pushes back against is that people have to choose between quantity of life and quality of life - he says that people can live well and long with palliative care. He presented data from many studies in renowned journals, like the New England Journal of Medicine and JAMA Neurology, relaying the benefits of palliative care. These were clinical trials run on people with cancer who did and didn’t receive palliative care.

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

Huntington Study Group je výskumná sieť snažiaca sa o urýchlenie výskumu liekov na HCH. Deň 1, Prvý pre nás relevantná informácia bolo Volbenazíne lieku proti mimovoľným pohybom, ktorá schválila americká agentúra pre kontrolu liečív. Medzi hlavný nežiadúci účinok je spomenutá ospalosť ktorá sa ale po nejakom čase podávaniu lieku zmierni.   Prebiehala aj debata o …

Konferencia Huntington Study Group 2024 Čítajte viac »

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

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.

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.