PRESS RELEASES

11-2023

The Spanish Association of Orphan and Ultra Orphan Drug Laboratories (AELMHU) has presented its annual awards in recognition of the contribution of institutions and healthcare professionals in the field of rare diseases. The event took place at the Bentelsmann Space and was attended by a notable representation of industry professionals, patient organizations, scientists and institutional representatives of the health field.

In this fifth edition, AELMHU wanted to highlight, posthumously, the exceptional work carried out by Dr. Julio Sánchez Fierro, awarding him this year's Honorary Award for his contribution in favor of patients in matters such as equity and access to medicines and his contributions in the development of numerous legislative texts. These contributions have confirmed him as one of the most outstanding figures in Spain in the defense of Health and Pharmaceutical Law in Spain.

The doctor, professor, researcher and expert geneticist Ángel María Carracedo Álvarez has also been distinguished in the category of best professional career in the field of rare diseases for his contribution to research and innovation.

In the category of best care project on Rare Diseases, the jury awarded the project 'Servicio de Atención Integral Telemática a las personas afectadas de Distrofia Muscular de Duchenne y Becker y sus familiares' of the Asociación Duchenne Parent Project España. And completing the four categories of these awards, in the category corresponding to the best project for dissemination, diffusion and awareness of RRD, the winner was the 'RetroDravet' project of the Spanish delegation of the Dravet Syndrome Foundation.

Foto familia_Premios_AELMHU_2023