From Sandra Agustina Nieto-Martínez, President of HAE Mexico:
Veracruz is the first state of the Mexican Republic to implement a registry of patients with rare diseases as well as the policies necessary to provide patients with comprehensive diagnoses, medical care, and orphan drugs.
The initiative of Deputy Yazmin Copete Zapot was unanimously approved by the LXIV Legislature of the Congress of the State of Veracruz of Ignacio de la Llave and published in the Official Gazette on 17 February 2017.
According to the decision “The Secretary of Health of the state will implement the policies necessary to provide patients with rare diseases with comprehensive diagnoses, medical care, and orphan drugs necessary for each case” and “the Secretariat of Health of the state will integrate the State Registry of Rare Diseases to provide the patients with the necessary and sufficient medical attention.”
To make known such an important decree the Congress of the State of Veracruz convoked on 1 June 2017 to the Legislative Forum on Rare Diseases in Mexico, held at the Congress of the State of Veracruz of Ignacio de la Llave, in the City of Xalapa, Veracruz. The forum was represented by the President of the Mexican Organization of Rare Diseases Dr. jesús Navarro, inviting the Mexican Association of Hereditary Angioedema (AMAEH) to present the problem of treatment presented by patients with HAE. Apart from myself, testimony was given by the patient and founding President of the association Mr Antonio López Huesca. Accompanying in this event were Ms Alma Montero Palmeros, Vice President of AMAEH, and Dr Esthela Hernández Landeros representing the Latin American Association of Hereditary Angioedema.
