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22° Scientific Meeting Online – ISS e UNIAMO

 

Si terrà giovedì 8 aprile alle 15,  il nuovo appuntamento con i meeting scientifici “COVID-19 e Malattie rare”, promossi dal Centro Nazionale Malattie Rare dell’Istituto Superiore di Sanità UNIAMO. 
Durante l’incontro condivideremo esperienze e buone pratiche su Covid-19 e malattie rare con un focus sul Cile.
L’evento sarà trasmesso in diretta Facebook sulla pagina di UNIAMO Federazione Italiana Malattie Rare e a questo link
Durante il meeting è possibile inviare le domande ai relatori a questo indirizzo mail: qacovid.rare@iss.it.

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