I am dedicated advocate for the development of treatments for ultra rare diseases, bringing a unique blend of professional expertise and personal commitment to the table. Setting up a new model of Patient Advocacy Organization in Europe - an organization leading advanced international, interdisciplinary, collaborative research network united to cure ultra-rare disease. Helping other parents to run similar organizations in Europe and bring hope for other ultra-rare diseases. I am an experienced manager, leading commercial excellence teams in renowned FMCG and pharmaceutical companies. In my last role I was a member of the country leadership team, a leader of Polish pilot of Perfect Store EMEA and co-navigated commercial teams through turbulent times post-acquisition.However, my most profound role is being a mother to twin girls, one affected by an ultra rare neurological disorder. This personal experience fuels my relentless advocacy for advancements in treatment and support for individuals facing similar challenges. I am driven by a deep passion to make a meaningful difference in the lives of those affected by ultra rare diseases, leveraging my extensive professional background to drive change and improve outcomes.