On 4 September 2015, Dr Ségolène Aymé, coordinator of IRDiRC’s scientific secretariat, founder of Orphanet, and Emeritus director of research at INSERM, received the insignia of the Officer of the Order of the Legion of Honour of France for her many contributions to research and patient care for rare diseases. This prestigious declaration was presented to her by Dr Pierre Tambourin, Chief Executive of GIP Genopole Evry, at the platform of rare diseases in Paris, France. In his speech, Dr Pierre Tambourin traced forty years of her professional life dedicated to improving and developing patient care and rare diseases research. He equally referred to her role as women’s rights activist and ecologist. Upon accepting the insignia, Dr Ségolène Ayme spoke about the pleasure of speaking the universal language of science, and the privilege to have had the possibility to work internationally over the last twenty years, and she concluded by thanking all past and current collaborative partners for their role in her professional life.