Category: News

Webinar – Explore for Huntington: The Adventure of Dimitri Poffé in Latin America

To finish May Awareness Month in the most inspiring and hopeful way possible, the International Huntington Association and European Huntington Association had a webinar with Dimitri Poffé, a Huntington’s Disease […]

Light It Up for Huntington’s Disease 2022

It’s HD May Awareness Month and HDSI (Huntington’s Disease Society of India) is celebrating it with HD light-up, by lighting up buildings of proeminence in order to express solidarity with […]

Poland and Belgium spearhead efforts to help Ukrainian HD families 

If the situation in Ukraine isn’t desperate enough, spare a thought for those with the added burden of Huntington’s Disease. Danuta Lis, president of the Polish HD Association and Bea De […]

Webinar – All You Need To Know About Proof-HD

Yesterday, Prilenia hosted a webinar updating on the Phase III trial with Pridopidine. Thank you to everyone who join and a special thanks to our speakers, Michael Hayden, Andrew Feigin, […]

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 […]

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 […]