Carolina Navalon-Martinez

Carolina Navalon-Martinez was born with a congenital disorder, Arthrogryposis Multiplex Congenita, a rare neuromuscular syndrome. As an adult she was diagnosed with two autoimmune disorders, Axial Spondyloarthritis and Sjögren’s syndrome, the latter also a rare disease. She is a Board Member of the Spanish Patients´ Association affected by Arthrogryposis Multiplex Congenita (AMC) as well as Board Member of the Catalan League for inflammatory rheumatic diseases. She attended the Eurordis Summer School Spanish version on Medicines Research and Development in 2018, becoming a Patient Advocate after completing the course. Main liaison for the Creation of the I Spanish Patient Registry for AMC Arthrogryposis (Paediatric Hospital Sant Joan de Deu Barcelona (Spain); Shriners Hospital Canada; Ciberer, the Center for Biomedical Network Research on Rare Diseases in Spain). Collaboration with Shriners Hospital USA & Canada for AMC Arthrogryposis International Patient Registry: assistance on definition of Common Data Elements, data sharing accessibility, Pre-Delphi (2021-2022) from the patient´s and patient representative perspective. Next objective: the creation of the I European Alliance for Arthrogryposis organised by Patient Representatives.