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Vanessa Ferreira is responsible to work with European patients organisations at Santhera Pharmaceuticals. In her role, she brings her unique perspective of having been a rare disease advocate that founded a non-profit organisation. She has been a researcher, a lobbyist representing rare disease patients within patient organizations such as EURORDIS, and several years ago joined industry with the single goal of accelerating orphan medicines development from different angles. Vanessa is in a unique position to integrate patient groups’ insights since the conception of programs and projects done across departments. With this purpose in mind, she facilitates rare disease patient communities to connect supranationally, increases awareness with resources, helps identifying and sharing best practices transferable across countries and improves capacity-building of different patient groups.
She has been deputy at the Health Parliament Portugal and participated in developing political solutions around the topic dedicated to the patient at the center of decision on the future of health in Portugal.
She served several national and European rare disease patient organizations and helped eliminating key challenges faced by rare disease patient groups: (1) by establishing an International patient-driven network for research and orphan drug development, (2) by creating the World Congenital Disorders of Glycosylation (CDG) Awareness Day and (3) by facilitating community-building and exchanges through organization of International and national conferences for rare diseases. She conceived educational and empowerment programs targeted to patients, patient groups, researchers and medical opinion leaders. All these activities have been developed from her belief that to improve patients and families lives, stakeholders need to be patient-centric in their thinking.
Vanessa holds a PhD (Sc.D.) in Cell and Developmental Biology and an International MBA from IAE de Paris, Sorbonne Graduate Business School.