HD Focus

News Across the Globe

Deputado de Goiás propõe instituir a Política Estadual de Combate à Doença de Huntington

ABH – Associação Brasil Huntington

VALBENAZINA: UN NUOVO FARMACO CON INDICAZIONE PER LA MALATTIA DI HUNTINGTON

corea di huntington -AICH ROMA ONLUS –

Di che si tratta? Prof. Anna Rita Bentivoglio Responsabile UOS Disturbi del Movimento, Fondazione Policlinico Gemelli IRCCS, Roma I movimenti involontari, coreici e distonici (più lenti, cambiano la postura del busto e degli arti), sono i disturbi motori che più infastidiscono le persone con MH e anche persone con altri disturbi del movimento come per […]

L'articolo VALBENAZINA: UN NUOVO FARMACO CON INDICAZIONE PER LA MALATTIA DI HUNTINGTON sembra essere il primo su corea di huntington -AICH ROMA ONLUS -.

2023 issue Portuguese

Enroll

2023 issue Dutch

Enroll

Alison Steadman to present BBC Lifeline appeal

HDA - UK

How many is too many? Exploring the toxic CAG threshold in the Huntington’s disease brain

HDBuzz (English)

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!

Within the huntingtin gene that leads to HD is a stretch of repeating C-A-G letters. People with HD are born with 36 or more CAG repeats in the huntingtin gene. As a person grows older, we know the number of CAG repeats can shift and wobble in some cells, getting bigger over time.

Информационный ( поликлинический) день 28.04.2024 г.

Центр помощи пациентам с орфанными заболеваниями

 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 »

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PERIODICO GENNAIO – APRILE

corea di huntington -AICH ROMA ONLUS –

come vi avevamo anticipato, nel comunicato di marzo, il nostro periodico è sul sito e sarà inviato a tutti voi per mail. Lo troverete anche sui social. Inserire il periodico di AICH-Roma sui social è importante affinché le informazioni sulla ricerca, e sulla MH, siano divulgate a tanti anche a chi non è seguito dalla […]

L'articolo PERIODICO GENNAIO – APRILE sembra essere il primo su corea di huntington -AICH ROMA ONLUS -.

Nota de esclarecimento da ABH sobre tratamentos sem suporte científico

ABH – Associação Brasil Huntington

Update Prilenia

Nieuws - Vereniging van Huntington

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 

Mum facing onset of Huntington’s disease organises rock night in support of families

Scottish Huntington's Association

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.

We’re up for top award for vital work to empower young people

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.

Enroll-HD RNA collection initative launched

Enroll

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 […]

Peter’s family experiences inspire new fundraising chapter in his life

Scottish Huntington's Association

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.

Nota de falecimento: Rosângela Martins Ferreira

ABH – Associação Brasil Huntington

Красноярск 7.04.2024 г.

Центр помощи пациентам с орфанными заболеваниями

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 »

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Cry your eyes out: detecting huntingtin in tears

HDBuzz (English)

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.

Biomarkers are tools that researchers can use to assess how well a potential medicine is working. If a drug slows or stops the progression of a disease according to one or more biomarkers, it could mean that drug is working!

Rückblick auf die 35. Ordentliche Vereinsversammlung der Schweizerischen Huntington Vereinigung

Schweizerische Huntington Vereinigung

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 […]

Scientific Presentations from 2024 HDTC

CHDI Foundation

Março – 2024

Associação Portuguesa dos Doentes de Huntington

Órgãos Sociais 2023/2026  Conforme os nossos estatutos realizou-se, dia 23 de março de 2024, pelas 14:30 horas na sede da APDH (Art.º 25º nº 2 alínea c), a Assembleia Geral Ordinária, com a seguinte ordem de trabalhos:1. Apreciação e votação do Relatório de Contas da Direção do ano de 2023, e parecer do Conselho Fiscal,2. …

Março – 2024 Read More »