The Spanish Association of Orphan and Ultra Orphan Drug Laboratories (AELMHU) has published the jury's decision in the VI Edition of its Awards, aimed at recognizing the most significant contributions in the field of rare diseases. In an event that highlights the commitment of professionals and institutions, several awards have been given to outstanding researchers, communicators and healthcare projects.
Once again this year, the Association has had the privilege of having a jury made up of thirteen professionals of recognized prestige in the field of rare diseases, who have voted for the following winners:
- The AELMHU 2024 Honorary Award, awarded posthumously, went to Dr. Josep Torrent-Farnell, recognized for his extensive work in improving the lives of people with rare diseases. Torrent-Farnell was a prominent member of several institutions, including his role as the first director of the Spanish Medicines Agency (AEMPS) and chairman of the Committee for Orphan Medicinal Products of the European Medicines Agency.
- The Award for the Best Assistance Project has been awarded to the Ana Carolina Díez Mahou Foundation for its innovative "First Star María de Villota Program", which provides comprehensive treatment to children with neuromuscular diseases through innovative therapies and psychological support.
- The Award for the Best Professional Research Career has been granted to Dr. Lluís Montoliu, a reference in research on albinism and biotechnology, who has made pioneering contributions in gene editing technologies such as CRISPR in Spain.
- The Award for the Best Rare Diseases Dissemination Project was granted to the Spanish Association of Families Affected by Ataxia Telangiectasia (AEFAT) has been awarded for its initiative "Running, stop ataxia telangiectasia", which combines inclusive sport with social awareness, creating a positive experience for those affected.
- The Award for Best Communication, Outreach and/or Awareness Raising Work has been granted to Dr. José Luis Poveda. His dedication to raising awareness of rare diseases and his work on access to orphan drugs have been crucial to progress in this field.
The awards ceremony will take place on November 6 in Madrid, where industry professionals, patient organizations and institutional representatives are expected to attend.
Find out all the details of the awards here.
