HD Focus

2 февраля в 12.00 часов состоится Информационный (поликлинический) день для семей с болезнью Гентингтона .На инфо дне вы получите бесплатные консультации у лучших специалистов в области изучения и лечения болезни… More »

The post Информационный ( поликлинический) день 2 февраля 2025 г. appeared first on Центр помощи пациентам с орфанными заболеваниями.

Handlingar inför årsmötet hittar ni under fliken: Om RHS och föreningsdokument eller genom att klicka här! VÄLKOMMEN!

Inlägget RHS årsmöte 19 februari kl 18.30 publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

For Immediate Release Amy Gray Appointed as New President & CEO of HDSA (Huntington’s Disease Society of America) New York,...

The post Amy Gray Appointed as New President & CEO of HDSA (Huntington’s Disease Society of America) first appeared on Huntington's Disease Society of America.

When thinking about Huntington’s disease (HD) research participation, many of us picture white-coated physicians, forms and waiting rooms, tests and needles. In reality, that experience represents one of the many ways that scientists gather information about how best to care for people with HD. Impactful studies can take many forms, from cautiously investigating the safety […]

What do you envision the last phase of your life to be like? (We will explore this in more detail shortly.) How would you like to handle...

Článok má formu rozhovoru a preto vyberám len základné fakty ktoré spomenuli. Prvá bola zmienka o AMT-130, prvej génovej terapii testovanej na pacientoch s HCH. Výsledky po dvoch rokov hovoria o spomalení progresu ochorenia. Ďalšie výsledky by mali byť dostupné v Júni.  Ďalšou firmou ktorú spomenuli je PTC Therapeutic s liekom Votoplam. Liek sa podáva ako …

Profesor Ed Wild a jeho očakávania na rok 2025 Čítajte viac »

Vi har summerat året som gått med allt som vi som riksförbund arrangerat under 2024.  

Inlägget Året som gått – titta på filmen! publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Huntington Disease Society of India (HDSI) is a non-profit organization working towards the welfare of Huntington Disease affected families and bringing awareness about HD in society.

Iniciativa visa coletar dados para apoiar políticas públicas focadas em melhorar a qualidade de vida aos pacientes, seus cuidadores e familiares A Doença de Huntington (DH) é uma condição genética neurodegenerativa rara ao redor do mundo, mas com alta prevalência em algumas partes do Brasil com cidades em que a incidência chega a ser 80 […]

O post Pesquisa sobre Doença de Huntington é lançada no país apareceu primeiro em ABH - Associação Brasil Huntington.

We are EXCITED to be right around the corner from the first Help 4 HD event of 2025! On February 1st, from 8:00 AM to 12:35 PM (Pacific...

The International Huntington Association, in collaboration with the European Huntington Association, is organizing a campaign for Rare Disease Day 2025, on the 28th February. The slogan for this year’s RDD […]

Queridas familias ACHE, Tenemos algo muy importante que contaros para todos los jóvenes de la comunidad Huntington en España. En 2023 se reunieron 341 jóvenes de entre 18 y 40 […]

La entrada Forma parte del Congreso Internacional HDYO 2025 se publicó primero en .

For Jordan, Huntington’s disease (HD) has been a part of her life for as long as she can...

Vi är glada att meddela att sommarens familjeläger kommer att äga rum i vackra Hjo vid Vätterns strand den 26–29 juni 2025. Lägret är en fantastisk möjlighet för hela familjen att få nya kunskaper, umgås och dela erfarenheter med andra i liknande situationer. Det kommer att erbjudas aktiviteter för både barn och vuxna – allt…

Inlägget Save the Date: Familjeläger i Hjo 26–29 juni 2025 publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

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The HDBuzz editorial team had a virtual sit-down with HDBuzz founder, editor emeritus, Huntington’s disease (HD) researcher, and neurologist Professor Ed Wild. We laughed, we cried… actually we just laughed. But we also talked about HD research, the deluge of positive clinical trial news from 2024, and Ed’s outlook for 2025. Spoiler alert: it’s a […]