HD Focus

aktualizácia 2.3..2026 Pridopidín v kombinácii s HA10 znížil stratu neurónov buniek až o 74% Originál článku tu. aktualizácia z 17.10.2025 Podľa dvojročných výsledkov Pridopidín spomaľuje progres ochorenia u ľudí ktorý neužívajú antidopamínové lieky. Práve na tejto skupine ľudí plánuje Prelinea a Ferrera budúci rok rozbehnúť doplnkovú štúdiu vo fáze III. Podľa rozboru bolo spomalenie progresu ochorenia …

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Vi har uppmärksammat ett problem med inbetalningar av medlemsavgiften. OCR-numret fungerar för närvarande inte i OCR-fältet, utan behöver i stället anges i meddelandefältet! För frågor kontakta info@huntington.se

Inlägget Problem med medlemsavgift! dök först upp på RHS Riksförbundet Huntingtons Sjukdom.

The FDA wants more data before approving AMT-130 for Huntington’s disease in the U.S. On March 2026, uniQure shared in an update that current Phase 1/2 data weren’t enough for the agency. A new randomized, sham-controlled trial may be required.

Prehľad o nových postupoch so Slovenskými titulkami. https://player.vimeo.com/video/1084349951?texttrack=sk&badge=0&autopause=0&player_id=0&app_id=58479&fbclid=IwY2xjawQSe6xleHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEe3G37nIPXveNhcmmbgi_J9o4BfnGZx-O80e7tAAb6ne2VbOCYmarZa7ivoM4_aem_hDAL-1BGdMXmmPSPSD5G_g

⏱️ 6 min read | Vico Therapeutics’ Huntington’s disease drug VO659 is now being tested just twice a year, and the FDA has cleared the way for US trials to begin later this year.

Dear Huntington’s Disease Community, We are writing to share an update following our recent Type A meeting with the U.S. Food and Drug Administration (FDA.) On March 2, 2026, uniQure […]

For ANY questions: medinfo@uniqure or 1-866-520-1257

I dag, den 28 februari, uppmärksammar vi Sällsynta dagen. Bakom varje sällsynt diagnos finns en människa, en familj och en berättelse.Idag lyfter vi röster från familjer som lever med Huntingtons sjukdom – röster som alltför sällan får höras i samhället. Häromveckan publicerade vi en artikel om Huntingtons sjukdom i DN- för att öka allmänhetens kunskap…

Inlägget Sällsynta dagen 28 februari dök först upp på RHS Riksförbundet Huntingtons Sjukdom.

Evento promovido pelo Muitos Somos Raros e Casa Hunter marcou o lançamento da campanha "Doença Rara Não Tem Idade", iniciativa que conta com o apoio da nossa Associação.

O post ABH participa de coletiva de imprensa e lançamento de campanha de doenças raras em São Paulo apareceu primeiro em ABH – Associação Brasil Huntington.

FDA Seeks Feedback from Rare Disease Community The U.S. Food and Drug Administration (FDA) has opened a public docket to solicit input from the rare disease community. The FDA docket, available here , invites public comments from parties engaged in the design and conduct of rare disease clinical trials, including sponsors, investigators, patients, and patient advocates. This docket includes two distinct opportunities for feedback: The Center for Drug Evaluation and Research’s Accelerating...

⏱️ 8 min read | February 2026 HD research recap: published trial data from branaplam trial; new insights into the genetics of the HD "grey zone"; plus worms, brain circuits, eye tracking, and the hidden psychological weight of living at risk.

Voluntárias marcaram presença em atividade que destacou os desafios no acesso à saude enfrentados por famílias e pacientes.

O post ABH participa de encontro sobre doenças raras na Câmara Municipal de Porto Alegre apareceu primeiro em ABH – Associação Brasil Huntington.

Het risico op de ziekte van Huntington (HD) is meer dan een medisch gegeven; het is een allesomvattende psychologische belasting. Voor degenen die opgroeien met een aangedane ouder, is elke struikeling of verspreking een bron van twijfel: "Is dit het begin?" Een recente studie onder leiding van Dr. Fiona Eccles (Lancaster, VK) geeft een zeldzaam inkijkje in de binnenwereld van deze risicogroep. Aan de hand van diepte-interviews met twaalf nog niet genetisch geteste personen, werd onderzocht hoe zij mentaal overeind blijven terwijl de onzekerheid constant op de loer ligt.

ATTENZIONE POSSIBILITA’ DI ERRORI Per garantire una diffusione rapida e capillare delle notizie relative alla ricerca sull’HD e agli aggiornamenti sulle sperimentazioni in corso, questo articolo è stato sintetizzato tramite Intelligenza Artificiale dal sito HDBUZZ.NET e non è stato  revisionato da un redattore umano. Per una consultazione più affidabile, si consiglia di fare riferimento alla […]

L'articolo Branaplam per la malattia di Huntington: risultati promettenti, ma sviluppo interrotto sembra essere il primo su corea di huntington -AICH ROMA ONLUS -.

「日本ハンチントン病ネットワークが築く、当事者・ご家族のつながりの輪」https://genetics.qlife.jp/interviews/2026-02-17/ また、武藤香織先生のインタビュー記事も掲載されていま […]

When actor and businessman Mark Barrett signed up for an extreme 100km challenge he was already in training to make […]

11月29日（土）午後から新大阪駅周辺にて開催予定です。関西方面の皆さま、お待たせしました。遠方からの参加も大歓迎です。是非ご参加くださいね。詳細内容や申し込みは会員だよりであるプチ・ニューズレター53号をご覧ください。

Scottish Huntington’s Association has launched its 2026 Scottish Huntington’s Association Tartan Tee-Off charity campaign. The charity is looking to partner with other organisations, including golf clubs and businesses, to host fundraising golf days across the country to raise much needed funds in support of families living with Huntington’s disease.