The Guillermo Miranda Social Integration Center hosted for the second consecutive year the 2nd Awareness Day on Rare Diseases, organized by the Peña Barcelonista de Totana (Federación de Peñas de Murcia) as part of its “Solidarity Dream” project. The initiative, held to mark Rare Disease Day, is part of the various activities the supporters’ club carries out within the penitentiary center with the aim of promoting social awareness, solidarity, and the reintegration process of people deprived of liberty.
The event highlighted the work of the D’Genes Rare Diseases Association and the International Association of Relatives and People Affected by Lipodystrophies (AELIP), which strive to improve the quality of life of people with rare diseases and their families. It also featured the emotional presence of first-person testimonies, including the father of a girl diagnosed with Phelan-McDermid syndrome and an adult patient affected by pigmentary retinitis. In addition, professionals and volunteers emphasized the importance of supporting families living with these uncommon conditions.
Presentation of “The Odyssey”
One of the most moving moments of the day was the presentation of “The Odyssey,” a story collectively created by residents of the CIS Guillermo Miranda to raise awareness of the difficult journey faced by many people living with rare diseases. This pioneering initiative was developed in the center’s school and showcased the strong commitment of the residents, who demonstrated great respect and solidarity toward this cause. “The Odyssey” symbolizes the long pilgrimage experienced by thousands of families from the appearance of the first symptoms until the disease is finally identified.
The 2nd Awareness Day on Rare Diseases was presided over by Miriam Pérez, Director General for People with Disabilities of the Region of Murcia; Patricio Amorós, Director of the CIS Guillermo Miranda; and Juan Carrión, President of the D’Genes Rare Diseases Association, the Spanish Federation of Rare Diseases (FEDER), and the Federación de Peñas de Murcia.
