Ιστορικό

Η HDYO θα εγκαινιάσει το JOIN-HD, το Παγκόσμιο Μητρώο για την HD σε νεανική ηλικία

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 […]

Διεθνές Εικονικό Συνέδριο Νέων Ενηλίκων της HDYO

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 […]

Μάθηση με το παράδειγμα: HD-JUNIOR ένα εθνικό μητρώο για ασθενείς με νεανική νόσο του Huntington

Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of […]

Έκτακτη είδηση - Η Roche σχεδιάζει νέα μελέτη Tominersen

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 […]

Αφιέρωμα σε έναν σπουδαίο άνθρωπο - 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 […]

Ενημέρωση στις πακιστανικές δοκιμές

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 […]

Σεπτέμβριος 2021 - Δημιουργήθηκε ένα παγκόσμιο συμβουλευτικό συμβούλιο της κοινότητας HD

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 Νοεμβρίου 2021 - Πρώτη συμβουλευτική επιτροπή HD-CAB

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 Ιουνίου 2021 - Η 1η συνάντηση για τη νόσο του Huntington για τις αραβικές χώρες

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 […]