HD News

HDBuzz strives to be an honest and neutral source of information that Huntington’s disease (HD) families can turn to for trusted, unbiased reporting on research and clinical trial news. We’re honored to have become a global resource for the HD community over the years (14!) and we look forward to building upon the original mission of HDBuzz as we head into a new era. Read on to learn more about the new editors-in-chief and our plans for the transition.

The need for information

While we know it’s hard to fathom at this point, there once was a world before Google. In those dark ages, information was harder to come by. This was especially true for HD.

Fisioterapia, logopedia e stimolazione cognitiva “… certi segni iniziali avevano ingenerato il sospetto della presenza di una patologia; le parole di un medico o il … Scopri di più

L'articolo 8 giugno | HUNTINGTON: CORPO E MENTE sembra essere il primo su Huntington Onlus.

Aktualizácia s 24.4.2024 V priebehu testovania sa zaznamenalo aj zlepšenie pohybu spojené s asymetrickým poškodením mozgu. Takže ak niekto padal na jednu alebo druhú stranu pripadne mal problém s rovnomerným používaním rúk Ingrezza bola schopná zmierniť tieto komplikácie. Ingrezza bola schválená na používanie v Amerike.  Viac v článku tu. Aktualizácia s 15.11.2023  Testovanie Ingrezzy pokračuje a …

Valbenazín – KINECT-HD2 – Ingrezza – Aktualizácia 24.4.2024 Čítajte viac »

Drug hunters have been particularly interested in the repeating C-A-G letters of genetic code that lead to Huntington’s disease (HD). The number of CAG repeats gets bigger in vulnerable brain cells over time and may hold the key for slowing or stopping HD. Many scientists have been asking what happens to HD symptoms if we stop this expansion. Recent work from a group in London led by Dr. Gill Bates examined exactly this, seeking to define the threshold of CAG repeats needed to cause disease. Let’s discuss what her team found!

We’re all just alphabet soup

The genetic code of every living organism is made up of only 4 letters – C, A, G, and T. They’re combined in different ways to make every gene in our body. That’s a lot of diversity for just 4 letters!

 28 апреля 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 28.04.2024 г. appeared first on Центр помощи пациентам с орфанными заболеваниями.

Naša spoločnosť sa chce pripojiť ku kampani týkajúcej sa povedomia o Huntingtonovej chorobe ktorú zastrešuje Kanadská asociácia.  Toľko rokov bola Huntingtonova choroba (HCH), udržiavaná v tajnosti, kvôli stigme a diskriminácii. Kampaň #LightItUp4HD je skvelou príležitosťou pre ľudí s HCH zvýšiť povedomie o HCH a nadviazať kontakty, získať podporu od svojich komunít a napredovať s hrdosťou …

Rozsvietiť svetlá pre HCH Čítajte viac »

Prilenia Therapeutics B.V. vraagt toestemming voor het op de markt brengen van pridopidine

Een cruciale stap in het beschikbaar maken van pridopidine voor mensen met de ziekte van Huntington 

We are hugely grateful to Peter Yardley who is raising money in support of Huntington’s families with his new book through the sales of his book ‘An Anthology of Short Stories, Poems and Other Things.’ Peter’s late sister Myra had Huntington’s disease and his niece Gillian McNab – a Scottish

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The post Peter’s family experiences inspire new fundraising chapter in his life appeared first on Scottish Huntington's Association.

Chcel by som Vám predstaviť veľmi zaujímavý nápad, ktorý mala Sarah Jane z Anglicka. Je to iniciatíva ako sa pokúsiť obnoviť spoločenský a sociálny život ľudí s Huntingtonovou chorobou v pokročilejšom štádiu. Ako ochorenie postupuje, človek “stráca” pôvodných priateľov. Stáva sa osamelejším a môže si pripadať opustený. Priateľov veľmi bolí vidieť dobrého priateľa v stave …

Iniciatíva – Jeden deň v roku. Čítajte viac »

Enroll-HD RNA collection initative launched April 12, 2024 The Enroll-HD RNA collection initiative is now active! This initiative aims to create a high-quality, longitudinal RNA collection from at least 3,000 people with HD. Individuals across all stages of the disease life-course will be included, with a primary focus on premanifest and early manifest participants. Each […]

A mum of three from Lanark is ready to rock and raise funds in support of families – including her own – that are impacted by Huntington’s disease. Gillian McNab (54) has inspired four top local bands to join forces for SHA Rocks, a night of live music in aid

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The post Mum facing onset of Huntington’s disease organises rock night in support of families appeared first on Scottish Huntington's Association.

Scottish Huntington’s Association has been shortlisted for a prestigious award in recognition of our work with young people growing up in Huntington’s families. The National Youth Work Awards, hosted by YouthLink Scotland, celebrate the dedication and impact of youth workers and organisations across Scotland, highlighting their invaluable contribution to the

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The post We’re up for top award for vital work to empower young people appeared first on Scottish Huntington's Association.

A recently published collaboration between academic researchers and pharmaceutical companies was successful at detecting huntingtin in tears. The scientists were looking for a new, easy way to track Huntington’s disease (HD). If you don’t mind shedding a tear or two, they found it!

Biomarkers - biological metrics in tune with disease progression

Tracking disease progression is not only medically important to ensure patients are living a healthy life, but it’s also important for developing medicines for diseases like HD. Biological metrics that are in tune with disease progression are called biomarkers. There are different kinds of biomarkers, from images of organs, to tests of metabolism, to measurements made in body fluids.

7 апреля в Красноярске мы провели Школу здоровья для семей с болезнью Гентингтона . Первая встреча с докторами Красноярска и нашими подопечными состоялась в 2017 году. С тех пор программа… More »

The post Красноярск 7.04.2024 г. appeared first on Центр помощи пациентам с орфанными заболеваниями.

Die 35. ordentliche Vereinsversammlung der Schweizerischen Huntington Vereinigung fand am 23. März 2024 in Olten statt und bot einen tiefgreifenden Einblick in die aktuellen Entwicklungen und Erfolge der Organisation. Unter der Leitung von Jessica Köhli wurden wichtige Punkte der Tagesordnung diskutiert und beschlossen, die einen positiven Ausblick auf die Zukunft […]