Carolina Navalon-Martinez

Carolina Navalon-Martinez is a Barcelona-based Patient Advocate representing several associations focusing on: Rare Neuromuscular Disorders, Rheumatological and Autoimmune Illnesses, and Sports & Disability.

Carolina 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 and Vice-President of the Spanish Patients´ Association for Arthrogryposis Multiplex Congenita (AMC España). She is also a Board Member of the Catalan League for inflammatory rheumatic diseases. Furthermore, she is also the founding member and President of the Association Blue Health SUP Terapéutico, an NGO advocating for the establishment of therapeutic aquatic sports programs.

She attended the Eurordis Summer School (Spanish version) on Medicines Research and Development in 2018, becoming a Patient Advocate after completing the course. She has also been an EMA adviser.

She is the main liaison for the creation of the 1st Spanish Patient Registry for AMC Arthrogryposis (joint project with Paediatric Hospital Sant Joan de Deu Barcelona, Shriners Hospital Montreal-Canad and Ciberer, the Center for Biomedical Network Research on Rare Diseases in Spain).

She is part of ongoing working groups with international experts worldwide to create an AMC Arthrogryposis International Patient Registry and an AMC Alliance. She has assisted as a Patient Expert Advocate on the definition of the Common Data Elements, data sharing accessibility, Pre-Delphi (2021-2022) from the patient´s and patient representative perspective, which lead to the publishing of the scientific article ¨Common data elements for arthrogryposis multiplex congenita: An international framework¨ https://pubmed.ncbi.nlm.nih.gov/38491830/

Carolina combines her voluntary tasks at a national and international level, with some high-level sports activity: she is the 1^st woman in Spain to compete in SUP RACE 6km Long Distance discipline (Stand Up Paddle) and she was 2023 Catalonia´s champion for SUP RACE 3km Long Distance. As a person with disabilities being aware of the difficulty to find a safe space where to practice sports, she is now leading the 1^st Clinical study ever to assess the medical benefits of therapeutic Stand Up Paddle on people with musculoskeletal disorders and disabling diseases. Project coordinated with the Barcelona-based Sports Medicine Unit Hospital Clinic-Sant Joan de Deu.