The Spanish Association of Orphan and Ultra-Orphan Drug Laboratories(AELMHU) has participated this week in the Summit of Leaders of the Ibero-American Rare Diseases Associative Movement and in the presentation of the Study on the Rare Diseases Associative Movement in Ibero-America, organized in Madrid by the Ibero-American Alliance for Rare Diseases(ALIBER).
The summit, held on Tuesday at the Ministry of Health, was inaugurated by the Minister, Monica Garcia, and Juan Carrion, President of ALIBER and the Spanish Federation of Rare Diseases, and brought together representatives of Ibero-American countries with the aim of sharing the challenges and challenges of the group, as well as moving towards a global plan of action on rare diseases.
Our president, Beatriz Perales, accompanied by our executive director, Marian Corral, took part in a round table discussion on the challenges and opportunities posed by the implementation of the World Health Organization (WHO) resolution, promoted by Spain, which recognizes rare diseases as a global public health priority.
"From AELMHU we reiterate our willingness to collaborate with all parties involved so that the WHO resolution ceases to be a political statement and becomes tangible improvements in the lives of people with rare diseases. It is a strategic opportunity for Spanish legislation to incorporate and make its commitments effective, in order to align public action with the Pharmaceutical Industry Strategy, which places rare diseases as a priority line of action", emphasized Beatriz Perales.
In addition, this Wednesday, AELMHU also attended the presentation of the ALIBER study, held at the headquarters of the Ibero-American General Secretariat (SEGIB), which provides an analysis of the progress, challenges and needs of rare disease patient associations in Ibero-America.
Inaugurated by María Fernández García, Deputy Director General for Quality of Care, Directorate of Public Health and Equity in Health of the Ministry of Health, the Ibero-American Secretary General, Andrés Allamand, and Juan Carrión, the event showed the situation of rare disease associations in several Ibero-American countries, as well as the main conclusions of the study on genetics and genomic medicine, presented by Encarna Guillén-Navarro, President of the Spanish Association of Human Genetics.
From AELMHU we would like to thank ALIBER, FEDER, the Spanish Epilepsy Federation (FEDE) and its president, Elvira Vacas, as well as the rest of the organizers for having us in these important meetings that promote progress in the approach to rare diseases. We will continue working from the institutional collaboration and permanent dialogue with all the agents of the sector to keep rare diseases in the center of the political and health action.
