HD Focus

Nytida arrangerade den 6 mars ett webinar om Huntingtons sjukdom. RHS styrelseledamot och verksamhetschef för Sorbus vårdboende, Carina Hvalstedt, föreläste tillsammans med Katarina Sjöstrand och Elisabeth Karlsson från Grännässtrand vårdboende. Det var ett informativt webinar som ni nu har möjlighet att titta på i efterhand. Länk till webinar: https://nytida.se/om-oss/nytidas-digitala-seminarier/hur-ger-vi-det-basta-stodet-till-personer-med-huntingtons-sjukdom/

Inlägget Titta i efterhand på webinaret ”Hur ger vi det bästa stödet till personer med Huntingtons sjukdom?” publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

After getting a poor night’s sleep, anyone would agree that good sleep makes a huge difference in day-to-day life. (Just ask any student who has stayed up all night to cram for a test…or anyone with a newborn baby.) It’s so critical that there’s an awareness week dedicated exclusively to sleep! So during this Sleep Awareness Week, March 9th through 15th, we’re sounding the alarm on sleep issues related to Huntington’s disease (HD) by sharing new research that suggests sleep-related changes may be happening even earlier than we previously thought.

Your brain needs sleep!

Sleep problems are common in people with HD after they begin to experience symptoms. We know that people with HD tend to have less deep sleep and insomnia is really common - in fact, 88% of people with the HD gene report having disturbed sleep. But much less is known about whether sleep issues also occur in people with the gene for HD before symptoms arise.

Staat de Huntington Familiedag 2025 op 24 mei al in jouw agenda? De voorbereidingen zijn in volle gang! 

 

We kunnen alvast een klein tipje van de sluier oplichten; het zal op Papendal zijn! 

 

Binnenkort maken we het programma bekend en opent de (gratis) inschrijving. Hou onze kanalen hiervoor in de gaten. 

In a recent insightful conversation, Dr. Duffy addressed a pressing concern regarding the testing of children for Huntington’s Disease...

Missa inte att skicka in er anmälan till vårt uppskattade familjeläger som går av stapeln 26-29 juni i Hjo. Läs mer här:

Inlägget Anmäl dig till Familjeläger i Hjo 26-29 juni publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Staat de Huntingtondag 2025 op 24 mei al in jouw agenda? De voorbereidingen zijn in volle gang! 

 

We kunnen alvast een klein tipje van de sluier oplichten; het zal op Papendal zijn! 

 

Binnenkort maken we het programma bekend en opent de (gratis) inschrijving. Hou onze kanalen hiervoor in de gaten. 

After getting a poor night’s sleep, anyone would agree that good sleep makes a huge difference in day-to-day life. (Just ask any student who has stayed up all night to cram for a test…or anyone with a newborn baby.) It’s so critical that there’s an awareness week dedicated exclusively to sleep! So during this Sleep […]

Missa inte att skicka in er intresseanmälan till vårt uppskattade familjeläger som går av stapeln 26-29 juni i Hjo. Läs mer här:

Inlägget Intresseanmälan för Familjeläger i Hjo 26-29 juni publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Tanita Allen, a dedicated advocate for Huntington’s Disease and author of her much labored memoir “We Exist”, is starting a new column for the IHA website, called Be Empowered by […]

August 23, 2025 – August 24, 2025 AUDITORIUM  2, NIMHANS Convention Centre, Bengaluru, India.

Hello, everyone! I am truly honored to introduce myself as the newest columnist for the International Huntington Association’s online platform. Writing for this community is not only a privilege, but […]

This May, for Huntington’s Disease (HD) Awareness Month, we’re proud to take part in the global #LightItUp4HD campaign....

This May, we’re bringing a fresh twist to High Tea 4 HD, inviting you to host yourown event...

Nu finns program för kvällen! Missa inte att anmäla er! Huntingtoncentrum i Lund bjuder in till en informationskväll den 7 april kl 18-20.30. Programmet innehåller intressanta ämnen, t.ex. uppdateringar om kliniska prövningar och forskningsläget i Sverige och internationellt. Det kommer även hållas olika föredrag om allt från socialt samspel till sväljsvårigheter. Även vi på RHS…

Inlägget Program för Huntingtoncentrums informationskväll 7e april ute nu! publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

We’re back for the 3rd and final day of CHDI’s Huntington’s Disease Therapeutics Conference! New Technologies and Breakthrough Science This morning’s talks are kicking off with new technologies that have the potential of leading to breakthroughs in science for neurodegenerative diseases, like HD, and transform the field. Ross Wilson: Molecular Scissors To Chop Out CAGs […]

Vilans en de ergotherapeuten van Huntington KennisNet Nederland (HKNN) hebben de Hulpmiddelenwijzer geüpdatet. Mensen met de ziekte van Huntington, hun naasten en zorgprofessionals vinden hier nu actuele informatie over hulpmiddelen en praktische tips voor thuis.

De Vakgroep Ergotherapeuten van HKNN wilde haar expertise over hulpmiddelen en tips toegankelijk maken. Samen met Vilans bundelde ze deze kennis op één plek. Ergotherapeuten Louise Beerends en Lisette Kneepkens zijn enthousiast: “We bereiken nu meer mensen die ondersteuning zoeken bij dagelijkse activiteiten.”

Uitgebreide informatie
Annemieke Koning van Vilans benadrukt het belang van betrouwbare informatie. De Huntington-pagina biedt nu negen activiteiten met hulpmiddelen, tips en verdiepende links. Haar advies: “Kijk rond op de website en ontdek wat helpt.”

We’re back for the 3rd and final day of CHDI’s Huntington’s Disease Therapeutics Conference!

New Technologies and Breakthrough Science

This morning’s talks are kicking off with new technologies that have the potential of leading to breakthroughs in science for neurodegenerative diseases, like HD, and transform the field.

Ross Wilson: Molecular Scissors To Chop Out CAGs

Our first speaker is Ross Wilson, who is working on using CRISPR to selectively remove the disease-causing CAG repeats within the huntingtin gene. Whoa!

CRISPR is a molecular technique that began taking the scientific world by storm when it was broadly introduced in 2012. Just last year the first CRISPR-based drug was approved for blood diseases, like sickle cell anaemia.

You can think of CRISPR like molecular scissors. Researchers can use these molecular scissors to very precisely edit the genetic code to make all types of different changes. It’s a super powerful technique with many applications for diseases, including HD.

HDの患者・家族・医療従事者との交流から培ってきた経験を生かして、この病気に初めて接した方々のために、４つのテーマで情報提供の動画（各々５~６分の長さ）を製作しました。他の遺伝性神経難病の皆様のご参考にもなれば嬉しいです […]

Hello from Palm Springs! The HDBuzz team are here and ready to report on all of the exciting science that we are going to hear over the next 3 days from HD experts who have travelled from all over the world to be at CHDI's 20th Annual Huntington's Disease Therapeutics Conference. Get ready to follow along for some exciting Huntington’s disease research over the next 3 days!

Clinical Trial Updates

Our first set of talks are updates from pharma companies that have ongoing clinical trials.

PTC Therapeutics - PIVOT-HD Testing Votoplam

Up first is Amy-Lee Breadlau from PTC Therapeutics with an update on votoplam, formerly PTC-518. Votoplam is a HTT-lowering drug that’s taken as a pill. The idea is that by lowering the disease-causing protein, signs and symptoms of HD will be reduced.

Amy-Lee started by sharing the fantastic news that PTC has an exciting new collaboration with Novartis, a massive drug developer. PTC will complete the ongoing PIVOT-HD trial, but Novartis will be in charge of all future clinical trials, like their planned Phase 3.