HD Focus

Our wonderful Patron Sarah Winckless MBE will become the first woman umpire for the Men’s Oxford and Cambridge Boat Race […]

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?” dök först upp på RHS Riksförbundet Huntingtons Sjukdom.

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.

Mulheres de Huntington não acordam cedo, muitas vezes elas nem dormem e quando dormem, de vez em quando, ou quase sempre, têm pesadelos com um fantasma nada suposto e sim lídimo. Esposas de Huntington receberam um diploma de guerreiras sem ao menos terem recebido treinamento pra isso, quanto mais faculdade, mas as que não conseguem […]

O post Mulheres de Huntington apareceu primeiro em ABH - Associação Brasil Huntington.

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 […]

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. 

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 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.

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

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 […]

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 […]

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 […]

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.

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.