We have just launched a project called “Moving Forward” where we aim to mobilise people at risk or presymptomatic to become more involved in Huntington research.
Moving Forward was launched by the European Huntington Association a few weeks ago. The project aims at mobilising people at risk for Huntington’s disease and people who are presymptomatic in Huntington research and trials.
Those of us who are presymptomatic (tested positive for the Huntington gene) – and per definition do not show any symptoms of the disease – are not patients. However, if you are presymptomatic you might benefit from treatment in the future.
Therefore, we believe that people who are presymptomatic and people who are at risk should be more included and involved in research and trials.