Category: News

EHA Conference 2023 Belgium

SAVE THE DATES! October 19TH -22th 2023 We will provide more information soon. For now, here is our flyer:

EHDN 2022 Plenary Meeting in Bologna

EHDN 2022 Conference took place in Bologna (Italy), from September 16th to 18th. It was the first face-to-face conference since before the pandemic on 2019, a unique and memorable experience with people from all over the world. The European Huntington Association has been actively involved during the EHDN Conference, trying to capture the best moments…
Read more

Status of VIBRANT-HD, the study of branaplam

Another set-back for HD research was announced by Novartis on August 8. The Vibrant-HD trial has stopped dosing due to the fact that some of the trial participants have exeperienced negative effects in the nerve system outside the brain. Novartis provided a community letter regarding Vibrant HD clinical trial updates. In this letter, they explained…
Read more

Photo exhibition ‘Abandonment: From Landscapes to Mindscapes’

‘Abandonment’ may take different forms and faces Intentionally or unintentionally, we often abandon places, objects, humans or ourselves. Abandonment becomes even more brutal when it involves a life-changing and mind-changing condition such as Huntington’s Disease.  For many years, the European Huntington Association (EHA) has met people who found ways to turn their experiences of sorrow…
Read more

Adoption of the Global Action Plan on Epilepsy and other Neurological Disorders

We are delighted to support today’s announcement of the Global Action Plan on #Epilepsy & Neurological Disorders at the World Health Assembly The European Federation of Neurological Associations – EFNA, along with members of the OneNeurology partnership which EFNA co-founded, celebrates a major milestone for all those affected by neurological disorders today, with the adoption of the…
Read more

HELP US MAP HD PATIENTS AND FAMILIES ACCESS TO SUPPORT AND CARE

We know that many HD families and patients are struggling to get the care and support they need. But we don’t know where the gaps are. How is this for you? Do you get what you need and is it easy to access? The European Huntington Association (EHA) has been working on an online survey…
Read more

The European Huntington Association is devasted by the Russian attack on Ukraine

The European Huntington Association is devasted by the Russian attack on Ukraine and all suffering this brings to people. The HD community is known for it’s warm and inclusive heart and we want the Ukrainians to know we are here and can help guide them to get in touch with experts if they suffer from…
Read more

First European HD patients has been dosed with Uniqure’s gene therapy 

First week of February another exciting step in HD research was taken, as the first two European patients were given Uniqure’s gene therapy in the ongoing Phase I/II trial.  The drug is named AMT-130.   Uniqure started the trial in the United States last year and is happy to be able to dose the first European…
Read more

A new dawn for Tominersen

Some mornings are better than others and Tuesday January 18th was definitely one of the really good ones as I woke up to a beautiful sunrise and the news that Roche has decided to do another Phase II trial with Tominersen.  The decision is based upon the analyses made from data collected in the Generation…
Read more

Generation HD1 – what does the data tell us?

ZOOM WEBINAR: Monday January 24th , 6 pm Central European time After several months digging into all the information collected in the Generation HD1 trial Roche is ready tell us about their findings in a webinar organized by EHA in collaboration with Roche and EHDN. Lauren Boak, PhD and Peter McColgan, MD, PhD from Roche…
Read more