We are an umbrella organization for Huntington’s Disease (HD) associations from 32 countries.
EHA Board elected April 2025
🧬Research into pridopidine continues with the launch of PRECISE-HD.
Many people in the HD community remember the EMA’s decision in 2025 not to approve pridopidine. Today, Prilenia and Ferrer have announced the launch of a new international Phase III clinical trial, to answer an important question raised by previous research.
We’ve explained everything in our latest article.
Novartis is driving forward the development of votoplam as a potential treatment for Huntington’s disease. During the webinar, Beth Borowsky and Åsa Petersén, explained the development of Votoplam to date, its mechanism of action, the study design, as well as the inclusion criteria and assessments, and the practical implications that participation in the study will have for the patients included in it.
Novartis is driving forward the development of votoplam as a potential treatment for Huntington’s disease. During the webinar, Beth Borowsky and Åsa Petersén, explained the development of Votoplam to date, its mechanism of action, the study design, as well as the inclusion criteria and assessments, and the practical implications that participation in the study will have for the patients included in it.
Real people with real stories.
From selling cookies to sitting on international boards, our volunteers show that there is no single way to make a difference. Meet the people behind the HD community — and find out how you can be part of it too.
Super exciting news for the HD community: Novartis´s announcement of the new the global Phase 3 trial for Votoplam will be called INVEST-HD.
The trial will test how well Votoplam works and the safety in a larger group of participants. This is the next step in the previously investigated Phase 2 PIVOT-HD trial.
Dr Sarah Gunn (a Lecturer in Clinical Psychology at the University of Leicester, UK, and a clinical psychologist) has been working with people affected by Huntington’s disease for around 13 years.
She has developed therapeutic interventions tailored for people affected by Huntington’s, which are showing positive outcomes for people who carry the gene expansion and for their caregivers.
In this third article, we turn to one of the most decisive and controversial components of HTAs: economic evidence, which primarily compares the benefits of a treatment with its associated costs.
There are different models used across European countries to perform HTAs. These models establish a framework that shapes whether, when, and how much weight the types of evidence (clinical, economic, and others) are given.
President Astri Arnesen attended the Orphan Drug Conference in Amsterdam to discuss how the new regulations on EU Joint Clinical Assessments (JCAs) can be a tool to ensure faster and equitable access to new therapies for Rare Diseases (RD).
Together with physiotherapists, we have developed a resource to help you live an active life.
Read our book on nutrition problems and solutions for to Huntington families, caregivers and medical staff.
Do you have trouble sleeping? Get simple tips on how to improve sleep here.
Keeping the mouth healthy is extremely important for people affected by Huntington's disease.
An online free course about Huntington’s Disease (HD) and how to provide the best care.
Do you have any questions about Huntington's disease? Ask our doctor!
This project wants to hear and engage those traditionally less involved in Huntington Disease research.
An European platform where all Huntington’s disease trials are presented in plain language.
A global initiative to represent the voice of the global HD community.
To learn more about our projects, events and other activities related to huntington disease and our big community
