Rubriik: Uudised

Haruldaste haiguste kogukond tuleb kokku, et avaldada raamat haruldaste haiguste päevaks, 28. veebruariks

Huntingtoni tõbi on põlvkondade vältel olnud varjatud ja hirmu all, jättes inimesed kogukonnas ilma hääleõiguseta. See raamat muudab seda. Huntingtoni tõve kangelased tutvustab kakskümmend kuus inimest [...]

Haruldaste haiguste päeva 2023 kampaania

Join our campaign for Rare Disease Day! February 28th is Rare Disease Day, where the rare community comes together, finds support and raises awareness for rare diseases across the globe […]

Roche/ Genentech ajakohastatud teave GENERATION HD2 uuringu kohta

Roche/ Genentech announce that Phase II GENERATION HD2 study is now open. This is great news for the international community since it is planned to run in 15 countries (Argentina, […]

Novartis lõpetab VIBRANT-HD uuringu

Novartis shared today the difficult news that they are stopping the VIBRANT-HD study of Branaplam, after some participants devoloping side effects. Read the full Novartis letter Even if this news […]

Rahvusvaheline Huntingtoni Assotsiatsioon saab väga suuremeelse annetuse

International Huntington Association has received a very generous donation. A Norwegian donor is behind the donation. He wishes to remain anonymous. The money is earmarked for a new position at […]

uniQure teatas, et nad jätkavad patsientide registreerimist AMT-130 uuringus kõrgema annuse tasemel.

A Message to the Huntington’s Disease Community from uniQure Dear Huntington’s Disease Community Members, This morning, uniQure issued a press release which included an update on our clinical trial ofAMT-130 […]

Wave Life Sciences annab teada, et faasi 1b/2a uuring SELECT-HD tulemused on positiivsed ja näitavad, et WVE-003 on valikuline sihtmärk Huntingtoni tõve puhul.

September 20, 2022 at 7:30 AM EDT PDF Version Single doses of WVE-003 appear generally safe and well-tolerated CSF mutant huntingtin (mHTT) protein was reduced following single doses of 30 […]

uniQure annab teada, et AMT-130 geeniteraapia I/II faasi kliinilises uuringus Huntingtoni tõve raviks kasutatava madala annuse kohordi kohta on ajakohastatud andmed.

~ Treatment generally well-tolerated with no significant safety issues related to AMT-130 in treated patients through one year of follow-up ~ ~ A mean reduction of 53.8% of mutant HTT […]

Annexon Biosciences ajakohastab uuringutulemusi

ANNEXON BIOSCIENCES REPORTS PHASE 2 CLINICAL TRIAL RESULTS DEMONSTRATING UPSTREAM CLASSICAL COMPLEMENT INHIBITION ASSOCIATED WITH CLINICAL BENEFIT IN HUNTINGTON’S DISEASE On June 7, Annexon, that is a clinical-stage biopharmaceutical company […]

Mai teadlikkuse kuu kokkuvõte

Maikuu 2022 jõudis lõpule. Veebiseminaride, nädalavahetuste ja Light It Up For HD vahel oli palju algatusi, mis tulid kõigist erinevatest [...]