الأخبار

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 advocate that is moving the community while traveling South America قراءة المزيد……

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 HD affected families and to bring awareness. Everyone can get قراءة المزيد……

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 Schepper, vice president of the Belgian Huntington Liga (Flanders) have قراءة المزيد……

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, Ralf Reilman and Anne Rosser and also to Dina de قراءة المزيد……

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 from both young people who have Juvenile HD and their قراءة المزيد……

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 subset of patients may benefit from Tominersen.  The analysis showed قراءة المزيد……

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 be overstated.  He helped establish the association in the 1980s قراءة المزيد……

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 support services in Asia. In conjunction with the Chinese Huntington قراءة المزيد……

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 families around the globe.  Members from 20 different countries provide قراءة المزيد……

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 wrote following the meeting to say “Thank you again for قراءة المزيد……