The Institute for Research and Social Development of Rare Diseases (INDEPF) met today with representatives of the regional PSOE in Castilla La Mancha to express their concerns about the difficulties faced by patients with rare diseases and the current situation of the associations that help this group.
The meeting, attended by Carmen Mínguez, a senator from the socialist party, José Antonio Contreras, a deputy and spokesman for the PSOE in the Health Committee of Castilla-La Mancha, and Ana Isabel Abengózar, Deputy Mayor of Alcázar de San Juan, was primarily aimed at communicating the need for economic resources to maintain the services provided by associations to patients suffering from rare diseases.
Continuing with its strategy of raising awareness of rare diseases, Jesús Ignacio Meco, director of INDEPF, expressed his concern about the comprehensive approach to rare diseases and the lack of knowledge surrounding them, even from the authorities. In many cases, this lack of dialogue results in delays in diagnosis and a lack of coordination among professionals, which ultimately affects patients, who should be at the center of any healthcare system.
Furthermore, addressing the issues that can arise in caring for people with low prevalence diseases, the director of INDEPF presented a healthcare debate that is currently on the agenda: neonatal screening in Spain and its inequalities between autonomous communities. While more than 80 rare diseases are screened in the US, the Ministry of Health in Spain only requires screening for 7.