An estimated 300 million people worldwide live with a rare disease. These patients typically face isolation, diagnostic difficulties, lack of therapies, fragmented care, stigma, struggle for recognition, and the need to become experts in their condition. All these factors are related to the rarity of the disease. The authors of the commentary act as Commissioners for the Rare Diseases International (RDI) - Lancet Commission on Rare Diseases. They represent a shift in the professional competence of healthcare workers. They highlight the need for professional and language experience in the rare disease ecosystem. They call for systemic and empathetic action in this area.