The Spanish Association of Orphan and Ultra-Orphan Drug Laboratories(AELMHU) has participated in the I Edition of the Bridges of Hope Forum - Integrated Strategies for the Advancement of Rare Diseasesorganized by the Pharmacy Service of the Hospital Universitario y Politécnico La Fe de Valencia.
The meeting, held on January 28 and 29 at the Palau de Les Arts in Valencia, brought together patients, healthcare professionals and the pharmaceutical industry to reflect on research and innovation in rare diseases, as well as the latest collaborative strategies in this field.
At the opening, by Elena Gras Colomer, General Director of Pharmacy of the Valencian Community, José Luis Poveda, Manager of La Fe Hospital, and Javier García Pellicer, Director of the Clinical Area of Medicines of La Fe Hospital, the speakers pointed out the importance of "building bridges to work together on comprehensive solutions" against rare diseases.
On behalf of AELMHU, its executive director, Marian Corral, took part in the round table 'Where we come from and where we are going. Engines of Change', moderated by José Luis Poveda, and which was also attended by Elena Gras Colomer; Óscar Zurriaga, from the Department of Preventive Medicine and Public Health at the University of Valencia; Pablo Daniel Lapunzina, scientific director of the Center for Biomedical Research Network on Rare Diseases (CIBERER); Mónica Climente Martí, head of the Pharmacy Service of the Dr. Peset University Hospital in Valencia; and the patient Noah Higón.
In her speech, Marian Corral called for the collaboration of all the agents in the sector "to position rare diseases as a strategic area within the regulatory changes that are taking place both at European and national level, and which will mark the path to be followed in the coming years".
"One example is the new Pharmaceutical Industry StrategyAELMHU, together with other members of the industry and representatives of the Administration, collaborate to cover the needs of patients and place rare diseases as a priority line of action," he added.
Likewise, Marian Corral urged patients to shorten access times to orphan drugs, "regardless of where they live"." We must make an effort to ensure that the time that the Administration and the companies need to negotiate price-reimbursement does not slow down patients' access to the treatments they need," she said.
In this line, the executive director of AELMHU has claimed the importance of having a specific "consensual, transparent and agile" evaluation and financing model . "Rare diseases and orphan drugs cannot be treated in the same way as treatments for more frequent and prevalent pathologies. We need their specificities to be understood and understood. For this reason, there is a great need for early dialogue between the parties involved with the aim of finding and assessing other early access routes for these types of treatments," he emphasized.
AELMHU would like to thank the Pharmacy Service of the Hospital Universitario y Politécnico La Fe de Valencia and its managing director, José Luis Poveda, for their invitation to participate in this important event within the sector, which encourages us to continue collaborating with all the agents involved to achieve a better future for patients with rare diseases.