This donation brings the total amount contributed by the Foundation to the Sant Joan de Déu Children’s Hospital (Barcelona, Spain), over the last two years, to €119,500. The funds have been used to conduct a research project based on the CRISPR-Cas9 genetic engineering technique. This has, in turn, allowed for the creation of a National Patient Registry at the CIBERER (Center for Biomedical Network Research on Rare Diseases) database. The results contribute to broaden the knowledge on the natural history of the disease by means of standardized rating scales.
Adria delivered the check on behalf of all children who, like him, suffer from this severe disease, as well as all collagen-VI families that are part of the Noelia Foundation and with whom we join forces to push forward.
September, 19 2018: € 37.500. Proof of transfer.