The medical specialist in genetics, Alejandro Gaviño Vergara, highlighted the importance of addressing rare diseases, pointing out that they affect 1 in every 2,000 people and that there are currently more than 7,000 such conditions, 70% of which are of genetic origin. He emphasized the need to raise awareness of these diseases, as well as to increase research, specialists, and access to timely treatments and diagnoses.
Gaviño Vergara underscored the relevance of having early diagnoses to provide effective treatments that improve the quality of life for patients and their families. He also noted the shortage of genetics specialists in Mexico, where there is only one geneticist for every half a million inhabitants, urging for more resources to be allocated for the treatment of rare diseases.
At an event commemorating World Rare Disease Day, various specialists, representatives of civil society organizations, patients, families, and caregivers attended, all agreeing on the importance of having larger budgets, timely diagnoses, and treatments.
Deputy Éctor Jaime Ramírez Barba thanked those involved in this cause, highlighting the need to continue fighting for better conditions for those suffering from rare diseases. He emphasized that, while the lighting of the Chamber of Deputies is a significant gesture, the true commitment lies in continuing to raise awareness and improve conditions for these patients. Ramírez Barba also mentioned the efforts in the Congress of the Union to approve expanded metabolic screening and establish unique digital clinical records for each patient as part of legislative advancements in this area.
