Representatives from the Health Ministries of 17 Ibero-American countries met this Thursday with key stakeholders and the rare disease patient advocacy movement in a meeting prior to the XVII Ibero-American Conference of Ministers of Health, where it was ratified that these pathologies constitute a health priority in the region.
The meeting, presided over by Queen Letizia, included an address by the Minister of Health, Mónica García, who called for the integration of rare diseases into the health and social protection policies of each State through national plans or strategies, in line with the World Health Organization (WHO) Resolution on rare diseases, which urges "to leave no one behind."
The president of the Spanish Federation of Rare Diseases (FEDER) and of the Ibero-American Alliance of Rare Diseases (ALIBER), Juan Carrión, participated in the event along with the vice presidents of ALIBER, Jesús Navarro and Luz Victoria Salazar. They emphasized that the challenges faced by the 47 million people living with a rare disease in Ibero-America include long waiting years for a diagnosis, barriers in access to treatments, and significant inequalities depending on the country and place of residence.
In this context, ALIBER has made its Ibero-American Decalogue of Priorities available to all involved, aligned with the WHO Resolution on rare diseases, with the aim of promoting structured Ibero-American cooperation around diagnosis, data generation, and access to treatments, relying on the alliance itself to foster its development.
Similarly, the need to move towards a shared definition of what is understood by rare diseases, which will serve as a reference for future norms and regulatory frameworks, has been emphasized.
"Talking about rare diseases is talking about equity, dignity, and ensuring that no person is left behind, wherever they live," stressed Juan Carrión.
The organizations present at the event emphasized that this is "just one more step," but at the same time, a "historic opportunity" for Ibero-America to progress jointly and place people with rare diseases and their families at the core of health policies.