HD Focus

Pôvodná spáva s 25.6.2026 Blokovanie zápalovej dráhy cGAS-STING spôsobilo v myšom modeli zlepšenie koordinácie a rovnováhy. Jej blokovanie bolo spôsobené liekom na základe malej molekuly. Podľa zistení zápal napomáha k progresii HCH. Je to nový prístup a mohol by pomôcť ktorémukoľvek pacientovi.  Originál článku tu.

Aktualizácia 25.6.2026 UniQure obnovilo jednanie o zrýchlenom schválení AMT-130 na Americkom trhu.  Originál článku tu. Ďalší článok o tom tu. Aktualizácia 13.5.2026 uniQure požiadalo o schválenie AMT-130 vo Veľkej Británii. Oficiálnu žiadosť chcú podať v 3/4 2026.   Originál článku tu. Aktualizácia 8.3.2026 Americká lieková agentúra FDA žiada o ďalšie testovanie AMT-130. Takže asi bude realizovaná fáza III.  Originál …

AMT 130 – aktualizované Čítajte viac »

Post grad students from Abertay University have teamed up with Scottish Huntington’s Association to develop a computer game designed to […]

Op woensdag 3 juni vond bij Topaz Overduin een HD-café plaats over een onderwerp waar niet gemakkelijk over gesproken wordt:  de euthanasieprocedure bij de ziekte van Huntington. 

Joey Kruyshaar (21) uit Overdinkel start deze zomer een bijzondere actie. Gedreven door de ingrijpende impact van de ziekte van Huntington binnen zijn eigen familie, loopt hij een persoonlijke wandeltocht van 200 kilometer. Zijn doel? Geld inzamelen voor onderzoek en deze nog relatief onbekende ziekte op de kaart zetten onder het motto: “Samen strijden tegen Huntington.”

We are delighted to announce that Scottish Huntington’s Association has been selected as Tabletop Scotland’s Charity of the Year for […]

⏱️13 min read | Australia just made history by banning life insurers from using genetic testing against you. But for HD families in other countries, the laws meant to protect haven’t kept pace with the science. Let’s break down what you need to know.

Завершающим мероприятием нашего проекта ««Улучшение качества и доступности помощи пациентам с болезнью Гентингтона и их родственникам: очные и онлайн-консультации, обучение медицинского персонала и ухаживающих лиц»» стал информационно-поликлинический день, который состоялся 20 июня сего года.В очередной раз… More »

The post Завершающее мероприятие 20 июня 2026 г. appeared first on Центр помощи пациентам с орфанными заболеваниями.

Please note the following dates and venue are subject to change, so please contact your HD Specialist or email sha-admin@hdscotland […]

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 e non è stato  revisionato da un redattore umano. Per una consultazione più affidabile, si consiglia di fare riferimento alle versioni originale in […]

L'articolo Malattia di Huntington: somministrate le prime cellule staminali neurali in uno studio clinico pionieristico sembra essere il primo su corea di huntington -AICH ROMA ONLUS -.

JHDN会員の皆様、ならびにご家族・支援者の皆様　現在、世界規模で開発が進められているハンチントン病の候補薬「ボトプラム（旧名：PTC518）」について、日本も加わる最終段階の試験（第3相国際共同治験）が開始されることに […]

⏱️ 9 min read | After a turbulent past year, uniQure have shared encouraging news that the FDA has agreed their Phase I/II study data can serve as the basis for an application that could lead to the approval of AMT-130 in the US.

We hebben koninklijk nieuws! Tijdens de viering van het vijftigjarig jubileum van de Vereniging van Huntington ontving onze vrijwilliger Ineke Rohaan een koninklijke onderscheiding en werd ze benoemd tot lid van de Orde van Oranje Nassau.

HDSA Statement on uniQure’s AMT-130 Regulatory Update 1

The post HDSA Statement on uniQure’s AMT-130 Regulatory Update first appeared on Huntington's Disease Society of America.

My name is Katie Jackson, and my journey with HD is both professional and deeply personal. My husband was diagnosed with HD at just 26. For 14 grueling years, I was his caregiver as he bravely battled this relentless disease, until I lost him at the age of 41. Now, six years later, I am once again staring down the barrel of this nightmare. My children are reaching the age where people are often considering testing, and after 20 years of fighting for them—20 years with no therapy—the fear is...

A new clinical trial for HD is underway. The first participant has been dosed in REGEN4HD, a study testing whether transplanting neural stem cells is safe as a potential treatment for HD.

A apresentação dos resultados da pesquisa conduzida pela ABH destaca o esgotamento dos cuidadores e a vulnerabilidade socioeconômica das famílias impactadas pela doença de Huntington.

O post ABH leva resultados do Mapeamento da DH ao centro do debate das doenças raras em Brasília apareceu primeiro em ABH – Associação Brasil Huntington.