Vanessa Ferreira

Vanessa Ferreira is a patient advocate who has committed more than 14 years of professional and personal commitment to patient associations in numerous countries and areas, such as rare diseases and cancer. She has one sister living with a rare disease called Congenital Disorders of Glycosylation (CDG). Her sister and the many families living with CDG and related serious conditions, are the inspiration for everything she does. She holds an MBA from Sorbonne University Paris and a Ph.D. in cell and molecular biology. From 2011- 2020 Vanessa worked in the pharmaceutical sector to speed up research and medicines development in coordination with patient groups. Since 2021, she has been Chief Engagement & Alliances Officer at Buddy service App.  

Vanessa co-founded Humanized Solutions Lda in 2022. Humanized Solutions provides consulting, training, coaching, and mentoring services to involve patients and the general public in all research and medicine life cycle activities. Her mission at Humanized is to support different stakeholders by implementing solutions co-created with the patient voice. She is interested in fostering sustainable collaborations and establishing patient-centricity as a norm for better health outcomes. She believes in a world where patient and public involvement is the norm instead of an exception, or isolated best practice examples or a one-off practice. 

Vanessa Ferreira founded the Portuguese Association for CDG (APCDG) in 2010.  Since 2011, she has taken a leading role in organizing the World Conference for CDG. Jointly co-created, this conference operates as a forum for consistently addressing community needs and steering the direction of research (Learn more HERE). In 2016 she implemented the World CDG Awareness Day and she co-founded CDG and Allies community-centric international research network for CDG at NOVA School of Science and Technology (FCT NOVA). Serving as the Head of Global Patient Advocacy and senior researcher at CDG and Allies, Vanessa Ferreira brings to the table unparalleled know-how and expertise in both quantitative and qualitative research methods, mixed research techniques, as well as human-centered design thinking methodologies. This ensures that every project she embarks on is crafted in tandem with the community's insights and perspectives. She has a proven track of scientific publications (~30 articles. Check HERE), focused on listening to what matters to the community and gathering insights with and for the CDG and related communities. Vanessa's methods and achievements are not just limited to CDG but have potential applicability across various therapeutic indications. Under CDG and Allies she has been mentoring graduate students in their thesis or dissertation research. In 2020, partnering with multiple stakeholders and CDG patient associations, Vanessa laid the foundation for the World CDG Organization. 

Since 2022, she has served as an academic mentor and guest lecturer for the Online Bioinformatics Master's program at Universidad Europea (Madrid) among other Universities. In recognition of her expertise and significant contributions, she is frequently invited to speak on the topic of patient and public involvement at various forums and conferences. 

She has represented patients in the European Organisation for Rare Diseases (EURORDIS) since 2010. She represents CDG as a member of the Steering Committee and Single Point of Contact (SPOC) of the European Reference Network for Hereditary Metabolic Disorders (MetabERN).  

In 2023, she has been appointed as a member of the International Rare Diseases Research Consortium (IRDiRC) Task Force dedicated to setting up a “Framework to assess impacts associated with diagnosis, treatment, support, and community integration”. Vanessa became a member of the Health Technology Assessment international (HTAi) Patient and Citizen Involvement Interest Group (PCIG) which the aim is to strength HTA with the systematic incorporation of patient and citizen perspectives. Moreover, she is a member of the recently established HTAi Rare Diseases Interest Group. Furthermore, she contributes her knowledge as a part of the Innovative Health Initiative (IHI) Patient Pool. She is currently enrolled in the EUPATI (European Patients’ Academy on Therapeutic Innovation) Patient Expert Training Programme for the 2022-2023 cohort.