PRESS RELEASES
The Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU) has presented the 8th edition of its annual awards, which recognize the most outstanding contributions by institutions, patient associations, and healthcare professionals in the field of rare diseases.
Dr. Carmen Ayuso, nurse Pedro Soriano, the ACROFAST project, the “El viaje de Nica” campaign, and Red ÚNICAS are this year’s award recipients, which recognize research, innovation in patient care, and public outreach in the field of rare diseases.
Access the full press release here.
In Spain, approximately 3.4 million people live with a rare disease. For many of them, therapeutic innovation may be the only available option. Orphan drugs are those intended to prevent, diagnose, or treat rare diseases, but their development presents specific challenges stemming from the small number of patients, the limited availability of evidence, and the high unmet medical need.
In light of the upcoming election and the process of drafting the platforms of the major political parties, the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU) has presented ten priorities for the next legislative term, calling for a cross-cutting commitment to rare diseases and their treatments—one that encompasses not only health policies but also industrial, scientific, economic, and competitiveness policies.
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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.
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Dr. Carmen Ayuso García, nurse and health educator Pedro José Soriano, the Red ÚNICAS project, promoted by the Interterritorial Council of the National Health System (SNS), and ACROFAST, as well as the “El Viaje de Nica” campaign, are the honorees at the 8th edition of the AELMHU Awards, which recognize the work of professionals, researchers, projects, and organizations that contribute to advancing knowledge of rare diseases, improving patient care, and raising public awareness of these conditions. These awards are presented annually by the Spanish Association of Laboratories for Orphan and Ultra-Orphan Drugs (AELMHU).
Access the full press release here.
Spanish associations in the pharmaceutical and cosmetics sectors have presented a report on the impact and new regulatory, economic, and operational challenges arising from Directive (EU) 2024/3019.
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 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.
Access the full press release here.
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.
Access the full press release here.