Mexican Senate and Chamber of Unite for Rare Diseases

In Mexico, the first National Bicameral Forum on Rare Diseases was initiated by the Senate and the Chamber of Deputies. The event brought together lawmakers, the medical community, academia, civil society organizations, patients, and their caregivers to draw attention to the needs of people living with rare diseases. A key consensus of the forum was the support for creating a National Registry of Rare Diseases, which will be a fundamental tool for collecting clinical, epidemiological, and social information, as well as for promoting scientific research and decision-making for chronic and complex conditions. Senator Emmanuel Reyes Carmona emphasized that this bicameral effort aims to mobilize institutional capabilities to ensure care for patients with conditions such as Turner syndrome, Pompe disease, hemophilia, spina bifida, and cystic fibrosis. He stated: "A nation cannot grow with a vulnerable or sick population. Strengthening the health system is essential for a productive society and a strong economy." Mónica Herrera Villavicencio, the main promoter of reforms to the General Health Law to create the National Registry, informed that the Chamber of Deputies' Health Committee has already approved a bill establishing both the creation of the National Registry and a National Commission for Rare Diseases. She called on senators to support the proposal once it is sent to the upper house, arguing that without systematic information, it is impossible to design effective public policies or realistic budgets. José Manuel Cruz Castellanos, president of the Health Committee, noted that having a registry will allow for a national census, strengthen diagnostic processes, identify the origin of diseases, and generate timely and accurate statistics on their prevalence. He affirmed that this data is essential for guiding clinical, budgetary, and health planning decisions, especially in a context where information fragmentation hinders comprehensive care. Dr. Esther Lieberman, a genetics specialist at the National Pediatrics Institute, explained that a rare disease is defined as one that affects five or fewer people per 10,000 inhabitants. She indicated that there are between 7,000 and 8,000 rare diseases, more than 80% of which have a genetic origin. Although individually infrequent, together they can affect up to 8% of Mexico's population, highlighting the real scale of the problem. The specialist pointed out that challenges in Mexico include early diagnosis through expanded neonatal screening, access to genomic studies, and continuous medical training to ensure timely referral to specialists from any level of care. She warned that the lack of hospital accreditation and the concentration of services force patients to travel, which can take between eight hours and a full day, affecting treatment adherence and quality of life. Senator Karina Isabel Ruiz Ruiz called for action with social empathy, emphasizing that diagnoses and treatments for rare diseases are often limited and costly. "Our social duty is to be empathetic towards those living with these conditions," she stated. Juan Carlos Loera de la Rosa highlighted that these are chronic, complex, and often genetic diseases that require sustained and coordinated responses from the state. Javier Dávila Torres, General Director of Planning and Evaluation and head of the Pharmaceutical and Medical Equipment Industry at the Ministry of Economy, reported on coordinated work with legislators, the Ministry of Health, civil associations, and the pharmaceutical industry to address these diseases. Alejandra Alegría Arrieta, head of the Coordinating Unit for Linkage and Social Participation of the Ministry of Health, warned of the "diagnostic pilgrimage," which causes emotional, financial, and social costs for families. She stressed that "low prevalence cannot be synonymous with low priority" on the public health agenda. Alejandra Zamora, national coordinator of patients for the Fabry group in Mexico, recognized the progress towards consolidating the national registry as a basis for realistic public policies. In turn, Marisela Herrera, president of the Foundation from Head to Sky, warned that there are innovative treatments and gene therapies approved in Mexico that are still not administered, which can lead to irreversible complications from childhood. From personal experience, Jimena Nava Peña, a patient with MPS IV-A (Morquio syndrome), called for working with children to foster social inclusion and prevent bullying, recalling that her diagnosis came at age four and her treatment twelve years later. Jennifer Massiel Escorcia Ramirez, president of the National Association Treacher Collins Syndrome in Mexico, recalled that since 2025, the UN has recognized rare diseases as a global public health priority, and emphasized that investing in research is investing in prevention, early diagnosis, and timely treatment. Among the joint agreements were: early comprehensive diagnosis, consolidation of the National Registry of Rare Diseases, inter-institutional collaboration to guarantee access to treatments, creation of a Health Fund for Rare Diseases, and linking clinical research, academia, and legislative work. The First Bicameral Forum on Rare Diseases concluded with the architectural illumination of the Senate of the Republic, led by Emmanuel Reyes Carmona, as a symbol of the legislative commitment to people living with rare diseases and a results-oriented national agenda.