Little recent data is available about people with visual impairments in France. This article presents the design process of an online survey aimed at providing a portrait of the life of the people with visual impairments, based on participatory research. Questions were determined and refined over several phases, including focus groups and a consensus process using the Delphi method. A total of 49 people participated in the project: people with visual impairments, relatives, professionals and researchers. The participatory design process resulted in a final survey that includes 191 questions about various topics. The value and challenges of participatory research are discussed. For example, the participatory nature of the project and its reach encouraged participants to stay involved even though the development process was time consuming. The data collected with the survey will be used to capture the diversity of people with visual impairments in terms of (dis)ability, needs and resources.