The Spanish Federation for Rare Diseases (FEDER) and the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU) have renewed their framework collaboration agreement, reaffirming their joint commitment to improving the lives, health, and care of the more than three million people living with rare diseases in Spain.
The agreement was signed at an institutional meeting attended by representatives of the boards of directors and management of both entities. On behalf of FEDER, Juan Carrión, president, Fidela Mirón, vice president, Mónica Rodríguez, secretary, David Sánchez, treasurer, Santiago de la Riva, member, and Isabel Motero, general director, participated; while AELMHU was represented by its president, Beatriz Perales, Iván Silva, member, and Marian Corral, director.
FEDER and AELMHU, which have a long history of collaboration, are thus consolidating their strategic alliance, which aims to advance knowledge, training, visibility, and social awareness of rare diseases, orphan and ultra-orphan drugs, and other treatments for these pathologies.
"The renewal of this alliance with AELMHU shows that joint work between associations and committed industry is key to responding to the challenges faced by people with rare diseases. Only through collaboration, dialogue, and shared knowledge can we move toward more equitable care, faster access to treatments, and greater social recognition of these diseases," says Juan Carrión, president of FEDER.
"For AELMHU, renewing this agreement means reaffirming our commitment to those living with a rare disease and their families. Every project and action we promote together with FEDER stems from the conviction that only by listening closely to patients and working alongside them can we move towards a more equitable healthcare system that is focused on their needs," says Beatriz Perales, president of AELMHU.
A central focus of the collaboration agreement is the provision of training activities for Federation members, with the aim of strengthening the skills of those involved in both the organizational management of associations and the support of affected individuals.
Along these same lines, FEDER and AELMHU will continue to collaborate on strategic alliances and projects with other entities in the healthcare sector, with the aim of defining new lines of work in the field of rare diseases.
In addition, the renewal of the agreement will strengthen the commitment to carry out awareness campaigns that increase social knowledge about rare diseases and give visibility to the needs of the associative movement.
Similarly, both entities will continue to promote joint participation in forums, conferences, and seminars. Each year, FEDER and AELMHU support and accompany each other at the most important events for both organizations, such as Rare Disease Day and the AELMHU Awards, with the aim of placing patients' needs at the center of the debate.
Finally, the agreement provides for the continuous exchange of information on the projects of both entities, which will improve coordination, identify priorities and needs of the associative movement, and optimize the planning of activities. This sharing will facilitate the identification of areas of shared interest, the detection of new synergies, and the strengthening of dialogue with administrations, regulatory bodies, and agents in the healthcare sector, thus reinforcing the capacity of both organizations to help improve care for people with rare diseases.
