
Ana Rita Moreira, Founder and President of the v-ATPase Alliance, is a force for change in the rare disease community. Motivated by her firstborn's diagnosis with an ultra-rare genetic disorder, she refused to accept the prognosis of "no answer or treatment." Leveraging her background in economics, branding, and communications, Ana Rita channeled her entrepreneurial spirit to build a community and a foundation where none existed before. The v-ATPase Alliance was founded in November 2023 with a clear mission: to unite affected families, advance scientific research, and raise awareness. The first year focused on establishing a critical Patient Registry, a foundational tool for understanding this complex disease. In 2025, the Alliance's vision is expanding. Our focus is on aggressively funding cutting-edge research to empower scientists, develop the first disease models, and meticulously characterize v-ATPase-related disorders. This strategic push is designed to forge a clear path toward effective treatments and, ultimately, a cure. Ana Rita understands the urgency that defines the rare disease journey. While it is not possible to control external factors like funding or regulations, it is possible to control commitment. The Alliance will continue to drive change from within, investing in the research that will transform lives. Together, we are redefining what is possible for our community, rare diseases and beyond.