Inês Alves has a degree in veterinary medicine, Oporto University; a post-graduation in soft tissues surgery – Lusofona University, and is a Ph.D. student, in Human Kinetics – Évora University, Portugal. Her advocacy involvement in rare bone conditions started after becoming mother of a child with achondroplasia in 2012. She is member of the Committee for Orphan Medicinal Products (COMP) at the European Medicine Agency; European Patient Advocacy groups (ePAG) representative at the European Reference Network for Rare Bone diseases – ERN BOND; founder and president of ANDO Portugal, the Skeletal Dysplasia National Association; co-leader of the Patient Outcomes at the European Registry for Rare bone and Mineral conditions (EuRR-Bone); EUPATI fellow and EUPATI Portugal vice-President; founder and first chair of the European Rare Bone Forum (ERBF); co-leader of the Translational Outreach working group of GEMSTONE COST action; member of EURORDIS E-rare and Rare 2030 expert panel and a patient expert at EMA and IMI. One of her main interests is translational research in skeletal dysplasias and now. ORCID ID: 0000-0001-8963-4736,
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