WHAT ARE THE NEEDS OF THE FRENCH HD FAMILIES ?
– Written by the Moving Forward Team on November 8th 2023
The Moving Forward team has been working closely with the Association Huntington France (AHF) over the last months to provide reliable and updated information about HD and HD research in French. Ghislaine Gate and Inès Zerzeri from the AHF have been pivotal in translating the Moving Forward and HD Trial Finder website content into French.
Recently, Gigi and Inès have played an essential role in helping put together a survey to understand what families impacted by HD living in France want from the national association. The survey also includes questions to learn about the experiences of the French community regarding research participation, as this is one of the main focuses of the Moving Forward project.
The survey only takes 5 minutes to complete, it is completely anonymous, and it will be open until November 20th 2023. So, if you are from an HD family, you live in France and you want your voice to be heard, please use this opportunity to share what’s on your mind. You can access the survey here:
All the information collected will be extremely useful to understand what the main needs, worries and wishes of the French families are and to plan and implement country-specific actions that can be truly meaningful for the local HD community.
The European Huntington Association and the Moving Forward team are very excited with this collaboration and look forward to checking the results of this French X-ray, as surely they will be extremely relevant to guide the future actions of the HD associations in the country.