The executive director of the Spanish Association of Orphan and Ultra Orphan Drug Laboratories(AELMHU), Marian Corral, has participated in the conference 'For an integrated approach to rare diseases: challenges and opportunitiesorganized by the Spanish National Research Council (CSIC) in a new initiative of its CICERON Itineraries Program.
The aim of this meeting, held on Friday, June 6, was to promote meetings between researchers, companies in the sector, patients, public administrations and the media, as well as to raise awareness of the CSIC's contribution to the study of rare diseases.
The event was attended by regional authorities, such as the Directorate General for Research and Technological Innovation of the Community of Madrid; representatives of pharmaceutical companies in the sector; Pablo Lapunzina, scientific director of the Center for Biomedical Research Network on Rare Diseases(CIBERER); Isabel Gemio and María Romo, president and director of the Isabel Gemio Foundation, respectively; the Association of Science in Parliament; Pilar López García, dean of the Faculty of Medicine of the Autonomous University of Madrid(UAM); and institutional representatives of the CSIC and the rest of the members of the Executive Committee of the Rare Diseases Network of the CSIC(RER-CSIC).
Over the course of two sessions, the initiative has promoted knowledge and a multidisciplinary approach to less frequent pathologies, creating a space for meeting and reflection among agents in the sector to generate collaborative ideas that help to address these diseases.
In the first session, which took place at the Sols-Morreale Biomedical Research Institute (IIBM), Ana Castro, Vice-President for Innovation and Transfer of the CSIC, and Pilar López Larrubia, Director of the IIBM, stressed the importance of "growing and advancing together", encouraging participants to join the RER-CSIC to advance in the understanding, diagnosis and treatment of these diseases.
After this institutional welcome, Marian Corral and the rest of the attendees visited five scientific-technical services of the center (Sebastián Cerdán Biomedical MRI, Genomics, Histology, Microscopy and Noninvasive Neurofunctional Evaluation) to learn about the work they provide to researchers.
Finally, in the scientific session, in the Espacio Converge, the CSIC's open innovation hub, six researchers from the RER-CSIC presented their main lines of work and shared questions and reflections with the attendees. In this debate, topics such as drug repositioning or the importance of integrating patients themselves in the decision-making process were addressed.
For AELMHU it has been a real honor to participate in these interesting sessions and to learn more about how a center of excellence, such as the CSIC, works in the research of pathologies considered rare. Events like this push us to continue promoting collaboration between all the agents of the sector to face the challenges that we still have pending.
