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 involved in three ways: Attend the light-up event at the Read more…
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 been leading efforts to help them. As fighting broke out Read more…
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 Sousa for European Huntington Association. Stay tuned to see more Read more…
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 caregivers. All the information people add to the registry helps Read more…
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 that less frequent dosing of Tominersen may benefit younger patients Read more…
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 to foster closer collaboration with researchers and break the taboo Read more…
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 Association and IHA vice president Xi Cao, the IHA is Read more…
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 valuable input to researchers, industry representatives, regulators and policy makers Read more…
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 the opportunity to participate in the 1st HD-CAB. It was a Read more…
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 Landwehrmeyer along with a number of other high-profile presenters. The original meeting was meant to be held live in Cairo Read more…
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