On February 18, 2025, the forum "Attention and Holistic Management of Rare Diseases at ISSSTE" was held. The event aimed to raise awareness about the importance of early detection and comprehensive management of these pathologies. In this context, the federal deputy of district 7 of Veracruz and Secretary of the Commission of Vulnerable Groups, Mónica Herrera Villavicencio, advocated for a legislative approach that ensures timely diagnosis and treatment for rare diseases.
During her interview, Mónica highlighted the relevance of making these diseases visible and the need for a constant commitment to raise awareness about the importance of early diagnosis. She committed to collaborating with civil associations, patients, and families to ensure their rights are upheld with dignity. Mónica emphasized that the topic of rare diseases should be visible every day, not just in February, as it is a condition that can affect anyone.
The deputy pointed out the lack of a national registry of rare diseases in Mexico as a significant challenge. The event was convened by the Medical Society of CMN 20 de Noviembre, ISSSTE, the Initiative Let's Think About Zebras, and the National Medical Center 20 de Noviembre, with the aim of advocating for a better quality of life and the right to health for all.
Mónica urged society to continue fighting for the visibility of these pathologies and clarified the need for greater clarity regarding which rare diseases are prevalent in the country. Additionally, she mentioned conditions like Asperger's syndrome and Tourette syndrome, which face ignorance and lack of legislative recognition.
The deputy emphasized the importance of early diagnosis so parents can identify symptoms from birth and provide adequate treatment for their children. Mónica shared her personal experience with muscular atrophy, highlighting the lack of health services that facilitate prevention and timely diagnosis in the country.
