The Argentine Federation of Rare Diseases (FADEPOF) has launched an initiative called "The Letters of Life" to generate empathy and awareness about rare diseases. These diseases are still little known due to their low occurrence and the lack of knowledge both in society and among health professionals about their suspicious signs and symptoms, according to the reflection of FADEPOF's president, Susana Giachello.
Luciana Escati Peñaloza, executive director of FADEPOF, highlighted the challenges faced by people with rare diseases in their daily lives, where simple tasks for the majority can become enormous obstacles for those suffering from these conditions. There is an emphasis on the importance of equitable access to health, education, and employment for these individuals and their families, considering them fundamental rights that must be guaranteed through concrete measures.
In Argentina, FADEPOF advocates for the development of a coordinated action plan with the 24 provincial jurisdictions to comprehensively address the needs of people with rare diseases and their families. The importance of making visible the reality faced by these patients is highlighted, where late diagnosis, unequal access to healthcare, lack of adequate treatment, and social exclusion are some of the most common difficulties.
Rare diseases present a wide range of origins and manifestations, from genetic to immunological or cancers, among others. They are chronic, complex conditions and in many cases potentially fatal, affecting a large percentage of children and mostly lacking approved treatments. FADEPOF has proposed a Roadmap for Rare Diseases in Argentina, aiming to improve access to early diagnoses, treatments, and comprehensive support for patients and families.
Through the game "The Letters of Life," FADEPOF invites society to put themselves in the shoes of those living with rare diseases, through challenges based on real situations. The federation proposes a series of strategies to address these diseases, ranging from the management of epidemiological data to promoting research and creating policies that favor social and labor inclusion for these individuals.
On the occasion of World Rare Diseases Day, FADEPOF seeks to raise awareness among society and policymakers about the importance of ensuring a comprehensive approach to these pathologies. The lack of information and awareness about these diseases contributes to the exclusion and stigmatization of patients, so it is crucial to promote a broader and more empathetic understanding of these realities.
