Christmas card from Roche

This December IONIS Pharmaceuticals announced their groundbreaking results from the first Huntingtin lowering trial in humans (called IONIS-HTTRx). At the same time it was announced that Roche was going to take over the trial. Here is a message from their team: Dear members of the Huntington’s Community, We are delighted Read more…

My Voice Matters! A successful initiative on value added medicines

Photo: Marc-Alexander MAHL, President, Medicines for Europe;  Astri ARNESEN, President, European Huntington Association; Donna WALSH, Executive Director, European Federation of Neurological Associations; Mariano VOTTA, Director, Active Citizenship Network; Umberto COMBERIATI, Chair of Value Added Medicines Group This article was published in the Active Citizenship Network (ACN) Newsletter Nr. 52 Last Read more…

Groundbreaking results!

This date will probably go into history along with the discovery of the Huntington gene in 1993. Today IONIS Pharmaceuticals announced the results from the first Huntingtin lowering trial in humans. The result exceeds all expectations. “I almost cried when I got the results,” Astri Arnesen the President of EHA, Read more…

LIRH Foundation Annual Conference

Scientific Research on Rare Diseases and Therapeutic Perspectives on Huntington’s Disease   When it comes to Huntington’s disease and clinical trials the questions are often numerous: Who are the key actors in the research process for rare diseases? What’s going on with Pridopidine? When will the Legato trial results be Read more…

Update on the situation in Malta

On the 16th of October EHA and LIRH met Huntington’s disease families in Malta.  The formal gathering of Huntington’s disease affected was the most participated  in the country. 18 people from 6 families attended the meeting. Together with them was EHA’s vice-president Barbara D’Alessio, LIRHs Founding Director Ferdinando Squitieri, the former Read more…

HD on the Bike

In the summer of 2018 the European Huntington Association wants to create awareness around Huntington’s disease. And we want to do it in a positive and fun way. We therefore invite all of you to join us in a biking race. We will participate as Huntingtonians United under the slogan Read more…

Thank you, Marjorie!

On this day, 6th of October 1917, Marjorie Greenblatt was born in Atlantic City, New Jersey. For many years she lived a life without any concern or knowledge about Huntington’s disease (HD). However, she ended up as one of the most significant figures in HD history.  She was the fourth Read more…

A promising future for Malta

The circumstances for people affected by Huntington’s in Malta are poor. However, the situation might change. This October EHAs Vice President Barbara D’Alessio and LIRHs Founding Director Ferdinando Squitieri are travelling to the small country to meet HD affected families. With a population of just 420 000 Malta is one of Read more…