The Spanish Association of Orphan and Ultra Orphan Drugs(AELMHU) has participated this Thursday in the XVIII International Congress on Rare Diseases of the D'Genes Association, which is being held in Murcia.
In her speech, AELMHU PresidentBeatriz Perales focused on the main challenges and obstacles to speeding up the delivery of orphan drugs to patients with rare diseases, such as accelerating and facilitating innovation and research; streamlining the evaluation and financing processes for this type of treatment; and ensuring true territorial equity among all autonomous communities.
"In rare diseases, each therapeutic advance represents a real opportunity for people who, in many cases, have no alternatives. In fact, approximately 95% of them have no treatment available. Therefore, we have to ensure that innovation reaches those who need it most, the patients."
The president of AELMHU took part in the round table discussion "Access to orphan drugs: Present and future", moderated by Manuel Posada, coordinator of the Ibero-American Network of Health Experts on Rare Diseases (RIBERSER), in which also participated César Hernández, general director of the Common Portfolio of Services of the National Health System and Pharmacy; Jesus Cañavate, General Director of Planning, Pharmacy and Health Research of the Region of Murcia; and María Ángeles Díaz, President of the National Association of Ehlers-Danlos and Hyperlaxity Syndrome(ANSEDH) and Secretary of D'Genes.
The institutional inauguration was carried out by the Regional Minister of Health of the Region of Murcia, Juan José Pedreño, and the President of D'Genes and the Spanish Federation of Rare Diseases, Juan Carrión.
