In launching #ENDOs, we aimed to achieve several complementary objectives at a European level. Firstly, to give greater recognition to and amplify the voices of those affected by endometriosis, by providing them with tools to express their experiences, understand their condition and play a more active role in their care journey. We also wanted to create practical and accessible resources that bring together art, health, research and innovation: a training programme, an emotional dictionary, a tool to simplify medical reports, exhibitions, a historical corpus and transferable guides. The aim was to transform experiences that are often kept silent into useful resources for patients, their loved ones, carers, artists and adult education professionals. Finally, we wanted to establish a European collaboration capable of fostering new practices at the intersection of culture and health, valuing patients’ experiential knowledge, and contributing to improved health literacy regarding endometriosis.
We applied to #ENDOs to address a need that remains largely unmet in Europe: the need to better recognise, name and share experiences of endometriosis, a common condition that has long been overlooked, under-treated and misunderstood. The application was based on the observation that those affected often remain cut off from cultural offerings, suitable educational resources and medical information that is truly understandable. The project therefore addressed several complementary needs: improving health literacy, strengthening the ability of affected women to express their experiences, developing tools to facilitate communication between patients, healthcare professionals and cultural actors, and establishing cooperation at European level between the arts, health, research and innovation. It also aimed to develop new training resources for adults, based on storytelling, creativity, women’s history and the simplification of medical language. In this sense, #ENDOs addressed a need that was at once social, educational, cultural and political: to bring to light experiences that are often kept silent and to transform these stories into useful, accessible and transferable tools.