TheSpanish Association of Orphan and Ultra Orphan Drugs(AELMHU) and theWeber Foundation have signed a collaboration agreement for joint research and/or training projects in the field of health.
The agreement, signed by Beatriz Perales, president of AELMHU, and Álvaro Hidalgo, president of the Weber Foundation, establishes a permanent working framework to position both organizations within their respective fields of action and develop activities in a coordinated manner.
Within the framework of this agreement, AELMHU and the Weber Foundation prepared the report on Differential Aspects of Orphan Drugs and their Value from a Social Perspective', which analyzes the particularities of orphan drugs and highlights their benefits not only for patients and their families, but also for the patients' families.which analyzes the particularities of orphan drugs and highlights their benefits not only for patients and their families, but also in social, economic and clinical terms for the healthcare system.
The report, presented at the 5th newsRARE Summer SchoolThe report, presented at the 5th newsRARE Summer School, held on September 25-26, 2024, concludes that treatments for rare diseases can significantly improve work productivity and reduce personal care burdens, resulting in reduced direct and indirect costs.
Specifically, it is noted that in metabolic diseases, direct costs can be reduced by more than 80%, while in hematological and immunological diseases, indirect costs can be reduced by up to 88%.
Prior to the formalization of this alliance, both entities had already collaborated in other events and activities, such as the conference on rare diseases at the Summer Courses of the University of Castilla-La Mancha, promoted by the Weber Foundation and newsRARE, which have become a major event in the field of rare diseases.The Weber Foundation and newsRARE have become a reference event and a space for meeting, analysis and multidisciplinary debate on these pathologies.
