Arkiv

HDYO kommer att lansera JOIN-HD, det globala registret för HD hos unga barn.

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:s internationella virtuella kongress för unga vuxna

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 […]

Lärande genom exempel: HD-JUNIOR - ett nationellt register för patienter med Huntingtons sjukdom i ungdomsåren.

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 […]

Breaking News - Roche planerar en ny Tominersen-studie

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 […]

Hyllning till en stor man - 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 […]

Uppdatering av pakistansk testning

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 […]

September 2021 - En global rådgivande HD Community Advisory Board har inrättats.

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 november 2021 - Den första rådgivande nämnden för 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 juni 2021 - Det första mötet om Huntingtons sjukdom för de arabiska länderna

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 […]