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 21 of November 2017, Active […]
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, states. Best Christimas Gift ever […]
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 available? What are the perspectives […]
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 Minister of Health, representatives from […]
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 HD on the Bike. And […]
Use your voice: Rare Barometer Voices
EURORDIS, the European Organisation for Rare Diseases is launching a new project called Rare Barometer Voices. This initiative aims to strengthen the voice of people affected by rare diseases in Europe. Transform your opinions and experiences into facts and figures so that they can be shared with European level policy makers and other influential figures. […]
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 of five siblings: Herbert, Gertrude, […]
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 the smallest and most densely […]
Summary of the Conference Stronger Together
In September around 250 people gathered in Sofia, Bulgaria. They came from 25 different countries from all over Europe – and even from Oman. The crowd consisted of old people, young people, extroverts, introverts, boys, girls and everything in between. But they all had one thing in common: Huntington’s disease. The 250 huntingtonians had a […]
A new coalition to give families a impactful voice
The European Huntington Association (EHA), Huntington’s Disease Society of America (HDSA) and Huntington Society of Canada (HSC) are proud to announce the formation of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE), a new global coalition to give families who are affected by Huntington disease (HD) a direct and impactful voice in HD clinical research. […]