PRESS RELEASES
The Association believes that the measure lacks a public health justification and runs counter to the differentiated treatment that European regulations grant to these medications. These treatments are already subject to one of the most rigorous evaluation and funding systems within the National Health System.
Economic measures that reduce the attractiveness of the Spanish market may affect the availability of new treatment options for patients
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The pharmaceutical sector specializing in rare diseases has not only established itself as a strategic area for healthcare innovation, but also as one of the segments with the most stable and highly skilled employment in the country. This is reflected in the “Snapshot of Employment in the Pharmaceutical Sector Specializing in Rare Diseases”, prepared by the human resources consulting firm AdQualis Human Results in collaboration with the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU).
The study, conducted on a sample of more than 30 companies operating in Spain, provides the first snapshot of employment in this sector, quantifying both the volume and quality of jobs, as well as growth prospects and the main challenges in attracting and developing specialized talent.
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Spanish associations in the pharmaceutical and cosmetics sectors have issued a joint statement on the European Directive on Urban Wastewater Treatment.
AELMHU, Aeseg, Anefp, AseBio, BioSim, Farmaindustria, and Stanpa share the environmental objective of the regulation, but we believe that the proposed extended producer responsibility system violates the “polluter pays” principle and runs counter to the principles of proportionality and non-discrimination.
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The National Association of Health Reporters (ANIS) and the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU) are organizing a new edition of the Training Workshop for Journalists on Rare Diseases and Orphan Drugs.
The goal of this training, led by nationally renowned healthcare professionals, was to create a forum where healthcare journalists could gain a deeper understanding of rare diseases and orphan drugs. Specifically, the speakers provided an analysis of the current state of research, access, and funding for rare diseases and orphan drugs, as well as the challenges still facing patients.
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The General Assembly of the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU), comprising its 29 member companies, has elected the Association’s new Board of Directors for the 2026–2028 term.
Beatriz Perales (Sobi) will continue as president of AELMHU for the next two years. Iván Silva (Kyowa Kirin), José Luis Moreno (Ultragenyx), Sergio Bullón (Alnylam), María Fernández (Amgen), Iria Nieto (PTC Therapeutics), and Angelino Ruiz (UCB) round out the new Board of Directors.
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The Spanish Association of Laboratories for Orphan and Ultra-Orphan Drugs (AELMHU) has published the “Report on Clinical Trials for Rare Diseases in Spain 2025, ” which analyzes the most relevant data on clinical trials authorized for these conditions in 2025, as well as their evolution over the past six years in Spain.
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AELMHU is holding its 4th National Conference on Advanced Therapies for Rare Diseases, at which experts, researchers, clinicians, patient associations, and national and regional authorities have agreed on the need to address these treatments in a comprehensive manner, going beyond the healthcare sector to also involve other areas such as science, industry, economics, and society.
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AELMHU has opened the application period for the eighth edition of its awards, which aim to promote awareness and visibility of rare diseases and orphan drugs.
Since their first edition in 2017, the AELMHU Awards have established themselves as the benchmark awards in the field of rare diseases, recognizing the work of professionals, patient associations, healthcare organizations, and researchers who contribute to improving the approach, awareness, and scientific knowledge of these pathologies.
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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.
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The Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU) has published its Annual Report on Access to Orphan Drugs in Spain 2025.
According to its findings, Spain funded a total of 20 orphan drugs (ODs) for rare diseases in 2025, which is three more than the previous year.
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