PROGRAMMA
Introduction and Chairs
Silvio Brusaferro, President of the Istituto Superiore di Sanità (ISS)
Luigi Bertinato, Head of the Scientific Secretariat to the President ISS
Annalisa Scopinaro, President of UNIAMO Federazione Italiana Malattie Rare
Domenica Taruscio, Director of the National Centre for Rare Diseases, ISS
COVID-19 and rare diseases: the experience of clinicians in Chile
Gabriela Repetto, Professor of Genetics, Institute of Science and Innovation in Medicine Facultad de Medicina, Clinica Alemana Universidad de Desarrollo, Clinical Geneticist, Hospital Padre Hurtado and Clinica Alemana, Santiago Chile
COVID-19 and rare diseases: the experiences of patients in Chile
Jessica Cubillos, Member of the Board of Directors for Federacion de Enfermedades Poco Frecuentes (FENPOF-Chile) and of Caminamos por Ellas y Ellos (Rett syndrome – Chile)
COVID-19 and rare diseases: a global perspectives of diagnosis, research and care during emergency. The clinical research global program in rare diseases fellowship experience
Barbara Hugonin, MD, Maternal Child Department, USL Toscana Centro, researcher and geneticist Rare Diseases Institute, Children Nationwide Hospital, Washington, fellow Leadership in Pediatric Program
Discussion and conclusions
Domenica Taruscio, Director of the National Centre for Rare Diseases, ISS