HD Focus

Chcem sa s vami podeliť o moje pocity z kongresu HDYO v Prahe, na ktorom som sa zúčastnila 14.–16. marca 2025. Cítila som sa tam naozaj výborne, celá udalosť bola nesmierne zaujímavá, obohacujúca a inšpiratívna.Určite viem, že to nebol môj posledný kongres.  Počas týchto dní som získala veľa nových a cenných informácií a nádej do budúcnosti. …

HDYO kongres 2025 Čítajte viac »

We are delighted to be the chosen charity for the 66th Women of Scotland Lunch. All proceeds will be donated […]

De Vereniging van Huntington heeft een nieuw Hoofd van het Landelijk Bureau. Per 1 mei gaat Cindy Kruijthof deze functie vervullen. Ze is momenteel nog werkzaam als casemanager Huntington bij Atlant in Apeldoorn, dat met de locatie Heemhof een expertisecentrum Huntington heeft. De 50-jarige inwoonster van Loenen volgt Gabriëlle Donné-Op den Kelder op.

“Ik ben heel blij en word alleen maar enthousiaster”, is de eerste reactie van de van origine HBO-verpleegkundige op haar aanstelling. Ze vindt het een logische stap gezien haar raakvlakken en achtergrond om als Hoofd Landelijk Bureau te gaan werken. “Ik kijk er naar uit om mooie dingen neer te zetten met het bestuur.” In haar nieuwe functie zegt Cindy, die in 2022 de Master Social Work afrondde, zich te gaan inzetten om meer aandacht te krijgen voor de ziekte. Ze wil ook de vindbaarheid van de Vereniging vergroten voor families waarin de ziekte zo’n grote rol speelt.

Evento da Aliança Rara Rio – ARAR na Praia do Flamengo destaca a importância da conscientização e do apoio a pacientes e familiares impactados por doenças raras No dia 16 de março, a Praia do Flamengo, no Rio de Janeiro, foi palco da “IX Caminhada pelas Doenças Raras”. O evento, organizado pela Aliança Rara Rio […]

O post ABH marca presença na “IX Caminhada pelas Doenças Raras” no Rio de Janeiro apareceu primeiro em ABH - Associação Brasil Huntington.

With the 2025 Federal Election approaching, we need your help to ensure HD is on thepolitical agenda. By contacting your local...

The Huntington’s Disease Youth Organization (HDYO) is an international non-profit dedicated to supporting, educating, and empowering young people up to the age of 35 who are impacted by Huntington’s Disease (HD). Founded in 2012, HDYO provides a safe space for young individuals and their families to access resources, connect with peers, and find professional support. […]

15 марта с. г. в Москве, в стенах Библиотеки- читальни им. А. С. Пушкина Центр «Редкие Люди» собрал своих друзей на День рождения. Центру «Редкие Люди» исполнилось — 10 лет!… More »

The post Наш юбилей! appeared first on Центр помощи пациентам с орфанными заболеваниями.

In a recent discussion, Dr. Karen Anderson provided valuable insights into the experiences of individuals affected by Huntington's...

Enroll! Newsletter 2024 is now available Enroll! Newsletter 2024 March 14, 2025 We are delighted to announce that the 2024 issue of Enroll! is now available. Highlights include a welcome from CHDI’s Chief Medical Officer Cristina Sampaio, coverage of EHDN & Enroll-HD 2024, and updates on Enroll-HD 2.0. Enroll! is published annually by CHDI and […]

A new study bolsters our confidence that neurofilament light (NfL), a protein released by damaged brain cells, could serve as an early warning signal for Huntington’s disease (HD) progression—appearing in the blood many years before symptoms start. Tracking NfL levels may revolutionize HD research by helping predict when symptoms will appear, improving clinical trial design, […]

Sally McKay is on a mission — a big one. She wants to empower the Huntington’s disease (HD)...

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

Welcome to the first issue of the year — the Autumn edition of HA Highlights. In this issue,...

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.

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.

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.