Arşivler

HDYO, Juvenil başlangıçlı HD Küresel Sicili JOIN-HD'yi başlatacak

HDYO will launch JOIN-HD, the Juvenile onset HD Global Registry, that will be open for Stage 1: Open Enrollment, starting February 4th.  JOIN-HD is a global registry that collects experiences […]

HDYO'nun Uluslararası Genç Yetişkinler Sanal Kongresi

Welcome to HDYO’s International Young Adult Virtual Congress March 5-6, 2022! After the success of our first event, we’re hosting another virtual congress! Join us for two days of sensational […]

Örneklerle öğrenme: HD-JUNIOR Juvenil başlangıçlı Huntington Hastalığı olan hastalar için ulusal bir kayıt

Avrupa Nadir Nörolojik Hastalıklar Referans Ağları (ERN-RND) ve Nöromüsküler Hastalıklar (ERN-EuroNMD) ve Avrupa Nörolojik Hastalıklar Akademisi (European Academy of [...] tarafından ortaklaşa düzenlenen nadir nörolojik, nöromüsküler ve hareket bozukluklarına ilişkin eğitim webinarları

Son Dakika Haberleri - Roche Yeni Tominersen Çalışması Planlıyor

Some encouraging news has just come in from Roche.  Analysis of the results of Roche’s Phase III GENERATION HD1 trial, which was stopped in March 2021, has found that a […]

Büyük Bir Adama Saygı - Gerrit Dommerholt

It is with great sadness we announce the passing of one of our founders.  Gerrit Dommerholt passed away in the Netherlands on the 31st December.  Gerrit’s contribution to HD can hardly […]

Pakistan testlerinde güncelleme

The International Huntington Association is committed to helping families impacted by Huntington’s disease around the world. As such, one of our current ongoing collaborations focuses on developing patient organizations and […]

Eylül 2021 - Küresel bir HD Topluluğu Danışma Kurulu oluşturuldu

IHA has partnered with the Huntington Disease Youth Organisation and European Huntington Association to create a global Community Advisory Board, named HD-CAB.    HD-CAB is made up of representatives from HD […]

3 Kasım 2021 - İlk HD-CAB Danışma Kurulu

Seven members of the PTC Therapeutics team joined 11 HD-CAB team members for an advisory board on the 3rd November.  Sian O’Neill, Senior Director of Patient Engagement EMEA & AP […]

25 Haziran 2021 - Arap Ülkeleri için 1. Huntington Hastalığı Toplantısı

The first Huntington’s Disease Meeting for the Arabic Countries was attended by participants from 14 different countries.  Thanks for its success goes to the chair and keynote speaker Prof. Bernhard […]