Understanding the Real Needs and Expectations of French Patients with Amelogenesis Imperfecta Through Facebook Content

Facebook groups have been adapted to form sup- port groups for people with rare disease such as amelogenesis imperfecta (AI). Nevertheless, no rigorous study has yet been conducted to systematically analyse this material in France. The main objective of our study is to gain a deeper understanding of the actual needs and psychological factors affecting French patients living with amelogenesis imperfecta (AI), through a rigorous analysis of all the contents exchanged within a dedicated Facebook group for patients and their members family. The correspondence analysis demonstrates a divergence between personal narratives—focusing on symptoms, care logistics, and medical engagement—and a broader discourse aimed at visibility, mobilization, and institutional recognition. The Descending Hierarchical Classification (DHC) of the corpus revealed four distinct lexical classes i.e., four topics: Healthcare navigation and access difficulties; Genetic disease framing and family impact; Dental symptoms and treatment experiences; and Community mobilization and advocacy, this last class being the most important for patients and their families. Our results confirm that support groups existing on Facebook offer improved social support through befriending other people with similar experiences; learning about the disease, treatments, and coping skills; emotional support; and feeling empowered.