Last Friday, the 1st Federal Congress on Rare Diseases (EPOF) was held at the Casa de las Culturas (Rivadavia 383), the first to be held in Argentina, which included the participation of pediatricians specialized in the subject, geneticists, CONICET researchers, and patients with and without diagnosis.
After the opening of the meeting, led by the provincial deputy, Berenice Latorre, councilor Belén Marón, one of the promoters of the initiative, expressed: “We are very happy and happy because it is the first time that a congress like this is held in Argentina and we want to be the spearhead so that it can be replicated. It is no coincidence that this is done in a Municipality like Quilmes, where we have a Mayor who does not stop working and who encourages us to build collectively. “I ask today that this EPOF table continues to grow, because these spaces are very important to be able to carry out public policies.”
For her part, the Secretary of Health, Carolina Begue, said: “Our idea is to share with health workers this training that doctors specializing in these rare diseases are giving today to raise awareness among our own professionals and to be able to provide this care. more comprehensive to all health centers in the municipality.”
The day was held with three tables with different topics: Table 1, with “Precision diagnosis, epidemiology and records”; 2, with “Towards municipal management with an EPOF agenda”; and 3. “Equity, education and disability.”
The congress had the notable participation of Dr. Rubén Sosa, pediatrician and infectious disease specialist, who has been working at the Dr. Pedro de Elizalde Pediatric Hospital for more than 35 years; and Dr. Javier Santos Vicente, famous specialist in the digestive system who currently works in the Neurogastroenterology Unit of the Dr. Ignacio Umbert Institute of Dermatology, a position that he combines with public health at the Vall d’Hebron General Hospital.
This initiative was possible thanks to work that has been carried out in an articulated manner in the district. First with the sanction of ordinance No. 14,044/2024, which adhered to Provincial Law No. 14,859 on the comprehensive care of people with EPOF and established the last day of February of each year as Rare Diseases Day. And then with the formation of the EPOF table, made up of the Paliamimos Foundation, Jaz Mitochondriales, Argentine Association of Williams Syndrome, Pediatric Uveitis Disease, Scleros Salud, Cluster Headache, Lysosomal Alliance and ALAPA (Argentine Alliance of Patients).
This work is supported by the Secretariats of Health and Women, Diversities and Human Rights of the Municipality of Quilmes; the communal disability area; the Dr. Isidoro Iriarte Hospital of Quilmes; the IDEAL Institute and members of the Chamber of Deputies of the province of Buenos Aires.
