Portuguese Association for CDG (APCDG)
|Name and Surname:||Vanessa Ferreira|
|Contact detail:||vmr.ferreira@ fct.unl. pt|
|Association Name:||Portuguese Association for CDG (APCDG)|
|Disease-related field:||Congenital Disorders of Glycosylation, CDG|
|Role within the association:||Founder/ Patient Advocate|
|Short bio:||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 holds an MBA from Sorbonne University Paris and a Ph.D. in cell and molecular biology. She has one sister living with a rare disease called Congenital Disorders of Glycosylation (CDG).
In 2022, she co-founded Humanized Solutions, whose mission 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. Since 2021, she has been Chief Engagement & Alliances Officer at Buddy service App. From 2011- 2020 Vanessa worked in the pharmaceutical sector to speed up research and medicines development in coordination with patient groups.
Vanessa Ferreira founded the Portuguese Association for CDG (APCDG) in 2010. In 2016 she implemented the World CDG Awareness Day and she co-founded CDG and Allies, the sole community-centric international research network for CDG. Vanessa’s rigorous structure and successful approaches allow her to actively listen to what is essential to families and professionals, ensuring that all projects are co-created with the community. She has a proven track of scientific publications (~30 articles), focused on gathering insights with and for the CDG community. Everything she does is transferable across therapeutic indications. Vanessa initiated the World CDG organization in 2020 with various partners and CDG patient associations (worldcdg.org). She has represented patients in 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).