On 27 February, the Marqués de Valdecilla University Hospital will hold an Update Day on Rare Diseases and the Need for a Multiprofessional Approach (360º), a meeting organised by the Hospital’s Internal Medicine, Paediatrics and Genetics Services to commemorate World Day for Rare Diseases.
The event, in collaboration with the University of Cantabria, the Regional Ministry of Health, the Cantabrian Health Service (SCS), IDIVAL and the Centre for Biomedical Research Network on Rare Diseases (CIBERER), will take place from 16:30 hours in the Hospital’s Gómez Durán conference room. Access is free, although for logistical reasons, those interested should send an email to enfrares360@gmail.com before 23 February to confirm attendance.
The Hospital’s medical director, Ramón Herrería, will be in charge of welcoming the participants and giving the first talk of the day, ‘Systematic diseases’, in which experts from Valdecilla and other hospitals in the country will address this topic. Álvaro Hermida, internist from the Complejo Hospitalario Universitario de Santiago de Compostela (CHUS), will speak on Fabry’s disease, and Domingo González-Lamuño, a doctor from the Paediatrics Department of the HUMV, will speak on Aminoacidopathies.
The second round table of the day, ‘New projects’, moderated by Domingo González-Lamuño, will start at 18:00. It will address different initiatives related to Rare Diseases thanks to the presentations of José Luis Fernández Luna, coordinator of the Genetics Service at Valdecilla, who will speak on Genomes in Paediatrics, and Nuria Puente, a doctor from the Internal Medicine Service at Valdecilla, who will give a talk entitled ‘Rare Diseases without Diagnosis’.
At 19:00 the third and last round table of the day will begin, ‘Different perspectives for the same objective’, moderated by the head of the Internal Medicine Section at Valdecilla, José Antonio Riancho. In it, patients and professionals from Cantabria’s associative network will present the different aspects derived from Rare Diseases.
On the one hand, the coordinator of the Early Intervention teams in Cantabria, Adelaida Echevarría, will give a talk on ‘Early Intervention’; then, Jesús Delgado, from the ES Retina Cantabria Association, will give a talk on ‘The patient’s vision’, and finally, the Director General of Planning, Organisation, Knowledge Management and Digital Health of the Regional Ministry of Health, Óscar Fernández Torre, will talk about the Rare Diseases registers.
Agenda
