Kategorija: Ziņas

Be Empowered by Tanita Allen, the new IHA website column

Tanita Allen, a dedicated advocate for Huntington’s Disease and author of her much labored memoir “We Exist”, is starting a new column for the IHA website, called Be Empowered by […]

Remembering Xi

It is with great sadness that we received the news that IHA Vice President Cao Xi has passed away, after a short illness.  Xi was also the Founder and President […]

SOM Biotech paziņo 2.b fāzes pētījuma rezultātus

SOM Biotech iepazīstina ar 2.b fāzes pētījuma rezultātiem ar SOM3355, kas demonstrē unikālu profilu ar ievērojamiem horejas uzlabojumiem Hantingtona slimības pacientiem un drošu profilu bez miegainības, [...]

Reto slimību dienas 2025. gada kampaņa

The International Huntington Association, in collaboration with the European Huntington Association, is organizing a campaign for Rare Disease Day 2025, on the 28th February. The slogan for this year’s RDD […]

RDI uzsāk jauniešu līderības programmu

Rare Diseases International (RDI), announced the launch of the RDI Youth Leadership Programme, an initiative designed to engage and empower young people within the rare disease community. This programme aims […]

Divpadsmit gadus veca meitene izdod bērnu grāmatu par Hantingtona slimību

Toronto student writes book so others will treat her grandpa kindly December 11, 2024 — Toronto, Ontario, Canada Most people have never heard of Huntington’s disease. This lack of awareness […]

UniQure paziņo par saskaņošanu ar FDA par AMT-130 paātrinātā apstiprināšanas procesa galvenajiem elementiem

Yesterday, uniQure issued a press release announcing alignment with the US Food and Drug Administration (FDA) on key elements of an accelerated approval pathway for uniQure‘s AMT-130 program in Huntington’s […]

Dokumentālā filma "The Present", kurā piedalās Dimitri Poffé, tagad pieejama Youtube vietnē

Dimitri Poffé is an already known member of the HD Community. After testing positive for Huntington’s Disease, Dimitri embraced a bicycle journey through South America. In this project, called Explore […]

PTC Therapeutics noslēdz globālu licences un sadarbības līgumu ar Novartis par PTC518 Hantingtona slimības programmu

2024. gada 2. decembrī - PTC slēgšanas brīdī saņems $1,0 miljardu skaidrā naudā -- PTC ir tiesīgs saņemt līdz pat $1,9 miljardiem izstrādes, regulatīvo un pārdošanas starpposma vērtību -- PTC sadalīs peļņu ASV un [...]

Sage Therapeutics pārtrauc dalzanemdora izstrādi HD gadījumā

DIMENSION 2. fāzes pētījums neatbilda tā primārajam mērķrādītājam Dalzanemdor kopumā tika labi panests; jauni drošības signāli netika novēroti Pamatojoties uz šiem datiem, uzņēmums neplāno [...]