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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The Spanish Association of Orphan and Ultra Orphan Drug Laboratories(AELMHU) has presented the VII edition of its annual awards, with which it recognizes the most outstanding contributions of institutions, patient associations and health professionals in the field of rare diseases.

Doctors María Luz Couce Pico, Pascual Sanz Bigorra and Patricia Smeyers Durá, the Andalusian Association of Hemophilia(ASANHEMO) and the Association of People with Achondroplasia and other Skeletal Dysplasias in Spain(ADEE) received the awards in this seventh edition.

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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.

Dr. María Luz Couce Pico received the AELMHU 2025 honorary award, while Dr. Pascual Sanz Bigorra and Dr. Patricia Smeyers Durá were recognized, respectively, for their research and communication, dissemination and/or awareness-raising work on rare diseases.

The Andalusian Hemophilia Association, for its "Comprehensive care and rehabilitation program for people with hemophilia and congenital coagulopathies", and the Association of People with Achondroplasia and other Skeletal Dysplasias in Spain (ADEE), with "Los Bufones de Velázquez", complete the awards of this seventh edition.

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The National Association of Health Informers (ANIS) and the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU), the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU) have organized this Wednesday the II Training Day on rare diseases, aimed at journalists specialized in health.

At the event, AELMHU's vice president, María José Sánchez, presented to journalists the data from the first 2025 Orphan Drug Access Quarterly Report, which analyzes the access situation for trade-name products with current orphan designation as of April 30, 2025.

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The Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU) has published a new report that analyzes the most relevant data on clinical trials authorized for rare pathologies and their evolution over the last five years in our country. The launch is framed in the context of the International Clinical Trials Day.

According to the data, a total of 929 clinical trials were authorized in Spain in 2024. Of these, 207 trials were aimed at rare diseases. A comparison of the number of clinical trials for rare diseases authorized in 2024 with that of 2023 shows an increase of 10% in the latter year. This increase is good news for the country, and especially for patients who are awaiting the arrival of a treatment, in many cases the first to treat their disease.

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You can download the infographic here.

The Spanish Association of Orphan and Ultra Orphan Drug Laboratories(AELMHU) has presented the VII edition of its awards, created with the aim of promoting knowledge about rare diseases and orphan drugs. These awards annually highlight the work of experts and organizations by recognizing their professional careers and the most outstanding projects in assistance, dissemination and awareness of these pathologies.

In previous editions, AELMHU has recognized the work of such relevant personalities in the world of rare pathologies as Ángel Carracedo, Francesc Palau, Julio Sánchez-Fierro, Josep Torrent-Farnell, Magdalena Ugarte, and José Luis Poveda, among others.

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