The Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU) and the Platform of Patient Organizations (POP) have signed a framework agreement for collaboration to advance joint initiatives aimed at improving access to innovation, contributing to the sustainability of the healthcare system, and promoting patient participation in healthcare decision-making.
The agreement establishes a framework for collaboration between the two entities to identify common interests, coordinate joint actions, and optimize efforts that help address the main challenges facing the healthcare system. These include access to orphan and ultra-orphan drugs, advanced therapies, the evaluation of innovation, the generation of evidence, and the reduction of inequalities in healthcare.
It also seeks to strengthen dialogue with the healthcare sector as a whole and give patients a stronger voice in strategic discussions that affect their quality of life.
Through this agreement, AELMHU and POP will promote the exchange of information and knowledge, joint participation in forums, conferences, and scientific symposia, as well as opportunities for dialogue with various stakeholders in the healthcare system and with national and European regulatory bodies.
In addition, both organizations will work to prepare reports, analytical documents, and proposals that contribute to improving health-care decision-making, particularly with regard to orphan drugs, innovative therapies, and the needs of people with rare and ultra-rare diseases. The goal is to contribute, from different perspectives, to health-care decision-making that is increasingly informed and aligned with patients’ actual needs.
The agreement also provides for the development of projects aimed at identifying and addressing needs in diagnosis, treatment, and access to innovation, as well as mutual support for awareness and communication campaigns that shed light on the realities faced by patients and their families.
According to Beatriz Perales Zamorano, president of AELMHU, “collaboration between those who drive research and development of new therapeutic solutions and those who represent the voice of patients is essential to advancing solutions that are truly aligned with patients’ needs. This agreement will allow us to share knowledge, generate evidence, and work in a coordinated manner to help improve access to innovation in the field of rare and ultra-rare diseases.”
For her part, Carina Escobar Manero, president of the POP, emphasized that “patient participation must be present in all phases of health policy: from research and evaluation to access, funding, and monitoring of outcomes. This agreement allows us to work for the benefit of all patients, regardless of their condition, and contributes to a more equitable and participatory health care system.”
Through this partnership, AELMHU and POP are strengthening their collaboration to address some of the key challenges in health care and reinforce the role of patients in health policy. Both organizations share a commitment to contributing to a more equitable, sustainable, innovative, and patient-centered health care system, in which evidence and patients’ experiences play a significant role in decision-making.