HD Focus

News Across the Globe

Hond Hunty bezorgt iedereen een glimlach

9 December, 2024

Nieuws - Vereniging van Huntington

Wie overdag binnenloopt bij Land van Horne kan, als hij zijn oren spitst, het getrippel van hondenpoten horen. Want in het expertisecentrum wonen en werken niet alleen mensen, maar ook hond Hunty is er vier dagen per week hard aan het werk.

PTC Therapeutics Enters into a Global License and Collaboration Agreement with Novartis for PTC518 Huntington’s Disease Program

9 December, 2024

Research – International Huntington Association

December 2, 2024 – PTC to receive $1.0B in cash at closing –– PTC is eligible to receive up to $1.9B in development, regulatory and sales milestones –– PTC to share profits in the U.S. and […]

Sage Therapeutics ceases development of dalzanemdor in HD

9 December, 2024

Research – International Huntington Association

The Phase 2 DIMENSION Study did not meet its primary endpoint Dalzanemdor was generally well-tolerated; no new safety signals were observed Based on these data, the Company does not plan […]

Going boldly: First person treated in Phase 1 clinical trial by Alnylam Pharmaceuticals

8 December, 2024

HDBuzz (English)

On December 3, 2024 a study site gave word that the very first person received a new drug, called ALN-HTT02, as part of a Phase 1 trial aiming to treat Huntington’s disease (HD). Going boldly as the first human ever to receive this drug, they’re charting a course that we all hope will one day lead to a disease-modifying drug for HD. Let’s dig into the details of this new trial!

Who is behind this new trial?

In September, Alnylam Pharmaceuticals announced that they were launching a clinical trial to test their huntingtin-lowering drug. A spelling error in the gene huntingtin, called HTT for short, is what causes HD. Those who inherit this spelling mistake in HTT will go on to develop changes with mood, movement, and memory as HD progresses. Lowering levels of the HTT molecule with the spelling mistake is one strategy being tested in the clinic to potentially treat HD.

Holiday gift-giving ideas for someone with advanced HD

8 December, 2024

Help 4 HD International

When it comes to gift-giving for the holidays, finding the perfect present for someone in the advanced stages of Huntington's disease...

Alnylam – ALN-HTT02

7 December, 2024

Spoločnosť pre pomoc pri Huntingtonovej chorobe

7.12.2024 – aktualizácia Tent týždeň bola podaná táto látka prvému človeku. Firma Alnylan je priekopníkom vo vývoji liekov na báze RNAí . Je to vlastne umelo vyrobený genetický materiál. Látka sa zameriava na exon 1 o ktorom sa predpokladá, že je toxický. Látka nie je selektívna takže znižuje oba HTT proteíny. Originál článku tu. 6.11.2024 …

Alnylam – ALN-HTT02 Čítajte viac »

Going boldly: First person treated in Phase 1 clinical trial by Alnylam Pharmaceuticals

7 December, 2024

Enroll

On December 3, 2024 we received word that the very first person received a new drug, called ALN-HTT02, as part of a Phase 1 trial aiming to treat Huntington’s disease (HD). Going boldly as the first human ever to receive this drug, they’re charting a course that we all hope will one day lead to […]

Cesta za lepší péčí: Jak jsme našli klid v těžkém rozhodnutí

7 December, 2024

Spoločnosť pre pomoc pri Huntingtonovej chorobe

Cesta k rozhodnutí o umístění blízké osoby do pečovatelského domu je dlouhá, náročná a plná emocí. Na jejím konci jsme ale nalezli klid, úlevu a radost, které bych přála každému z vás, kdo se nacházíte v podobné situaci. Jmenuji se Nikola a tento článek je mým osobním příběhem o tom, jak jsme s rodinou …

Cesta za lepší péčí: Jak jsme našli klid v těžkém rozhodnutí Čítajte viac »

Exciting News: PTC Therapeutics Enters into a Global License and Collaboration Agreement with Novartis for PTC518 Huntington’s Disease Program

3 December, 2024

News - Huntington's Disease Society of America

Оренбург 30 ноября 2024 г.

3 December, 2024

Центр помощи пациентам с орфанными заболеваниями

30 ноября в Оренбурге успешно прошла Школа здоровья для семей с болезнью Гентингтона. Программа реализуется при поддержке Фонда Президентских грантов. Это была уже третья по счету встреча, организованная нашим Центром в Оренбурге. Но программа Школы значительно… More »

The post Оренбург 30 ноября 2024 г. appeared first on Центр помощи пациентам с орфанными заболеваниями.

Giving Thanks to the Huntington’s Disease Family Community for Advancing Research

3 December, 2024

Enroll

Giving Thanks to the Huntington's Disease Family Community for Advancing Research

3 December, 2024

HDBuzz (English)

In the spirit of gratitude, this Giving Tuesday, the HDBuzz editorial team would like to reflect on the unique and transformative role the Huntington’s disease (HD) family community plays in advancing scientific research. From their resilience in the face of this extremely challenging condition, to their extraordinary contributions to scientific studies, the HD family community continues to be an essential partner in driving progress toward treatments and, one day soon, a treatmentcure.

Participation in Research: A Commitment to Progress

One of the most inspiring aspects of the HD family community is their unwavering commitment to participating in research. Clinical trials, observational studies, and other data collection efforts all rely heavily on the active involvement of individuals with HD, their families, and at-risk individuals. These studies demand time, effort, and emotional resilience, yet the HD community consistently rises to the occasion, understanding that their participation is key to scientific progress.

PTC Therapeutics Enters into a Global License and Collaboration Agreement with Novartis for PTC518 Huntington's Disease Program

2 December, 2024

Help 4 HD International

Self-determination on the HD journey: the role of Advanced Care Planning

2 December, 2024

Enroll

Here, we cover a report on Advanced Care Planning (ACP) prepared by clinical researchers at the University College London, reminding us there are things that can be done right now to improve the lives of people living with HD. Until we have drugs that slow the progression of HD, peace of mind can be some […]

HA Highlights: Summer Edition

2 December, 2024

Huntington Australia

Explore the Summer 2024 edition of HA Highlights. In this issue, you’ll find: …and much more!

Stöd vår insamling för att unga ska kunna resa till HDYO konferensen 2025 i Prag

1 December, 2024

RHS Riksförbundet Huntingtons Sjukdom

Den 12-14 mars 2025 så anordnar HDYO (Huntington Disease Youth Organisation) en ungdomskonferens i Prag för unga i familjer påverkade av Huntingtons sjukdom. RHS vill möjliggöra att unga vuxna från Sverige ska kunna åka för att skapa gemenskap och nätverk med andra unga påverkade av Huntingtons sjukdom runt om i världen. De kommer även att…

Inlägget Stöd vår insamling för att unga ska kunna resa till HDYO konferensen 2025 i Prag publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Help 4 HD ~ Help 4 the Holidays

1 December, 2024

Help 4 HD International

Our annual Help 4 the Holiday food program is OPEN! Click here to apply: https://www.help4hd.org/events-1/december-help-4-the-holidays-fo...

HDSA Podcast- New Episode Now Available!

1 December, 2024

News - Huntington's Disease Society of America

Bli en del av RHS styrelse!

29 November, 2024

RHS Riksförbundet Huntingtons Sjukdom

Bli en del av RHS styrelse- och gör skillnad! Vi på Riksförbundet Huntingtons sjukdom söker engagerade personer som vill vara med och göra skillnad i vår styrelse. Som en del av styrelsen får du möjligheten att bidra till vårt viktiga arbete för att stötta personer som lever med Huntingtons sjukdom och deras anhöriga, sprida kunskap,…

Inlägget Bli en del av RHS styrelse! publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

The UK Neuro Forum is being established following the #BackThe1in6 campaign

28 November, 2024

HDA - UK