The Spanish Association of Orphan and Ultra Orphan Drug Laboratories(AELMHU) has announced this Thursday the decision of the Jury of the VII edition of the AELMHU Awards, which aim to recognize the contribution of institutions, patient associations and health professionals in the field of rare diseases.
"Once again this year, these awards are intended to be a space for recognizing the commitment, effort and excellence of professionals, associations and organizations that work every day in the field of rare diseases. Their leadership and trajectory are an example for all of us, because behind each award there are years of work and an enormous vocation of service. From AELMHU, we will continue to promote this type of initiatives to improve the visibility and awareness of these pathologies," said Beatriz Perales, president of AELMHU.
In this seventh edition, in addition to the awards corresponding to the four categories evaluated by an independent and external Jury, the members of AELMHU have decided to grant the AELMHU 2025 honorary award to Dr. María Luz Couce Pico, for her leadership and long professional career in the approach, diagnosis, research and training on rare diseases, especially in the areas of neonatal screening and genetic diagnosis.
Dr. Couce is scientific director of the Instituto de Investigación Sanitaria de Santiago de Compostela (IDIS), as well as head of the Neonatology Service and director of the Diagnosis and Treatment of Congenital Metabolic Diseases Unit of the Complexo Hospitalario Universitario de Santiago de Compostela. She has published more than 200 scientific articles in prestigious scientific journals, and has led more than 30 national and international research projects, mainly focused on the metabolic area.
On the other hand, the Jury awarded Dr. Pascual Sanz Bigorra, Research Professor of the Spanish National Research Council (CSIC) at the Nutrient Signaling Unit of the Institute of Biomedicine of Valencia (IBV), the prize for the best professional research career in the field of rare diseases, for his important contribution in this field, especially in the study of minority pathologies such as Lafora disease, an ultrarare form of progressive myoclonic epilepsy.
Dr. Patricia Smeyers Durá, specialist in Neurology and Clinical Neurophysiology at the Hospital Universitario y Politécnico La Fe in Valencia, has been awarded the prize for the best work in communication, dissemination and / or awareness of rare diseases, both for her clinical and research dedication and for her project of children's stories about epilepsy, in which with a close and informative language helps to destigmatize the vision of this disease among society.
The prize for the best care project on rare diseases was awarded to the Andalusian Hemophilia Association (ASANHEMO), for its "Comprehensive care and rehabilitation program for people with hemophilia and congenital coagulopathies in Andalusia (PIAH)", which offers specialized physiotherapy, psychosocial care, therapeutic education and support for the autonomy of patients, with a special focus on children, youth and people in rural areas.
Finally, the award for the best project to disseminate and/or raise awareness of rare diseases went to "Los Bufones de Velázquez", developed by the Asociación de Personas con Acondroplasia y otras Displasias Esqueléticas en España (Association of People with Achondroplasia and other Skeletal Dysplasias in Spain, ADEE). This campaign seeks to combat the stigmas and prejudices that still persist in society towards people with achondroplasia, through the reinterpretation of the portraits of jesters painted by Diego Velázquez in the 17th century.
In this edition, the AELMHU Awards Jury was made up of thirteen professionals of recognized prestige in the healthcare field: Jesús Aguilar, president of the General Council of Official Associations of Pharmacists; Diego Ayuso, secretary general of the General Council of Nursing; Eva Bermejo, director of the Institute for Research on Rare Diseases of the Carlos III Health Institute; Domingo González-Lamuño, president of the Spanish Association for the Study of Inborn Errors of Metabolism (AECOM); Jorge Francisco Gómez, coordinator of the Minority Diseases Group of the Spanish Society of Internal Medicine (SEMI); Jorge Mestre, health economist; José María Millán, scientific director of the Center for Biomedical Research Network on Rare Diseases (CIBERER); Susana Fernández, vice-president of the National Association of Health Informers (ANIS); Francesc Palau, pediatrician and medical geneticist. Distinguished Researcher, Hospital Sant Joan de Déu and Institut de Recerca SJD. Head of the CIBERER Group; Belén Pérez, professor of Biochemistry and Molecular Biology at the Department of Molecular Biology at the Autonomous University of Madrid; Raquel Sánchez, lawyer specializing in Health Law; Vicente Martín, member of the Board of Directors of the Spanish Society of Primary Care Physicians (SEMERGEN); and Néboa Zozaya, first vice-president of the Health Economics Association (AES). The executive director of AELMHU, Marian Corral, is also a member, with voice but no vote.
The VII AELMHU Awards Ceremony will take place on November 5 in Madrid, in an event that, as in previous editions, will be attended by professionals from the pharmaceutical industry, patient organizations, scientists and institutional representatives from the health field.
