Members of the European Federation of HHT Patient Associations visited the CIB

Last Friday, October 18^th, the Biological Research Center received a visit from members of the European Federation of HHT Patient Associations (HHT Europe). Around 30 people from several European countries were received by Prof. Javier Cañada, Vice Director of the CIB, and Dr. Luisa Botella, principal invertigator of the TGB-Beta Receptor group in endothelial cells, where research on the Hereditary Hemorrhagic Telangiectasia (HHT). At the reception, they were told about both of the National Research Council (CSIC) and the CIB and the CIBERER program (Center of Biomedical Research in Rare Diseases Network). Also participating in this presentation were Prof. Emeritus Guillermo Giménez Gallego, promoter of the use of ethamsylate for the reduction of bleeding in HHT, which published in 1998 the action mode of this molecule as an inhibitor of the FGF (Fibroblast Growth Factor) pathway, and Julián Pérez, responsible for the Secugen spin-off, dedicated to DNA sequencing.

After the reception in the auditorium, visitors had the opportunity to learn about the facilities of some of the scientific services of the CIB, such as electronic and confocal microscopy, proteomics and genomics services and the Secugen spin-off. Special emphasis was placed on how these techniques can be used to elucidate the molecular mechanisms of this rare disease. Luisa Botella's group at the CIB has been working at HHT for 17 years. Their work is very recognized and, today, they are a benchmark for the investigation of this rare disease in Spain, for which they have already obtained three designations of orphan drugs (Raloxifene in 2010, Bazedoxifene in 2014 and Etamsilato in 2018). With this visit, the representatives of European patients have been able to approach what is done in laboratories in relation to their disease, knowing firsthand the research work, which is most of times unknown. 

Claudia Crocione, Manager of HHT ONLUS Italy and European Federation of HHT, ended the session recalling the importance of research carried out at the CIB. "This center belongs to all of us", she said, "since not all countries have researchers focused on HHT, working on molecules, asking themselves questions and doing studies". 

This visit took place in the framework of the Annual Meeting of the European Federation of Patient Associations of HHT (HHT Europe), which has held in Madrid on October 18-19. 

More information:

Video of the visit (in Spanish): link