HD Focus

 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.

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 -.

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 

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.

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 […]

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.

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.

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.

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!

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 […]

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 »

Восемь лет назад Центр «Редкие Люди» стал оказывать помощь людям с тяжелым генетическим недугом болезнь Гентингтона. Когда начали эту работу, то ощутили острую нехватку информации об этом заболевании, его диагностике,… More »

The post С днем Рождения Фонд Президентских грантов appeared first on Центр помощи пациентам с орфанными заболеваниями.

Den 22 april kl 18-20.30 bjuder Huntingtoncentrum i Lund in till en informationskväll med intressanta föreläsningar. Vi på RHS kommer också finnas på plats för att föreläsa och svara på era frågor. För mer information om programmet och anmälan se programmet nedan.

Inlägget Huntingtoncentrum i Lund bjuder in till informationskväll 22/4 publicerades först på RHS Riksförbundet Huntingtons Sjukdom.