Archives

HDYO will launch JOIN-HD, the Juvenile onset HD Global Registry

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 International Young Adults Virtual Congress

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 […]

Learning by example: HD-JUNIOR a national registry for patients with juvenile onset Huntington’s Disease

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 Plans New Tominersen Study

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 […]

Tribute to a Great 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 […]

Update in Pakistani testing

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 – A global HD Community Advisory Board has been established

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 […]

November 3, 2021 – First HD-CAB Advisory Board

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 […]

25th June 2021 – The 1st Huntington’s Disease Meeting for the Arabic Countries

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 […]