The vice-president of the Spanish Association of Orphan and Ultra Orphan Drugs(AELMHU), María José Sánchez, participated this Tuesday in the conference "Leaving no one behind", organized by the Spanish Federation of Rare Diseases (FEDER).
The meeting, held at the University and Polytechnic Hospital La Fe in Valencia, focused on the challenges faced by people with rare diseases, such as diagnosis, access to treatment and comprehensive care to ensure equity in all autonomous communities.
In the panel discussion "When health depends on access: a debate on inequity in access to treatments", moderated by Daniel de Vicente, member of the Board of Directors of FEDER, our Vice President was accompanied by César Hernández, General Director of the Common Portfolio of Services of the National Health System and Pharmacy; Santiago de la Riva, Vice President of the FEDER Foundation; and Víctor Rodríguez de Vera, lawyer of the Ramón y Cajal law firm.
Durante su intervención, la vicepresidenta de AELMHU ha señalado que el diagnóstico, la investigación, el desarrollo y el acceso a los tratamientos para enfermedades raras “siguen siendo grandes retos que se deberían abordar desde la colaboración público-privada“.
“Solo a través de una colaboración sólida, estructurada y centrada en el paciente podremos acelerar la investigación clínica y garantizar que los avances científicos se traduzcan en soluciones reales para quienes viven con enfermedades raras”.
In addition, the importance of neonatal screening to improve and accelerate the diagnosis of these pathologies was also discussed, as well as the key role of the autonomous communities in achieving equity in rare diseases.
