Inês Alves

Inês Alves
Inês Alves
WG6 Leader

Degree in veterinary medicine, Oporto University; a post-graduation in soft tissues surgery –
Lusofona University, and is currently (2021-2024) a Ph.D. student, in Human Kinetics – Évora
University, Portugal. Involvement in advocacy in rare bone conditions started after
becoming mother of a child with achondroplasia in 2012. Founder and president of ANDO
Portugal, the Skeletal Dysplasia National Association; 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; 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 patient representative expert at EMA and IMI. One of main interests
is translational research in skeletal dysplasias.