On World Rare Disease Day, we raise our voices to shed light on collagen VI…
Thanks to you, we keep sponsoring research projects!
The Noelia Foundation is the main provider of funds for the research project initiated at the Hospital Sant Joan de Déu in Barcelona last 2017, to which 163,500 € have already been allocated over in the last three years. This is a project aimed at finding a cure for Collagen-VI CMD by means of CRISPR technology, and building a National Patient Registry, which today amounts to 70 genetically characterized cases in Spain, and learning about the Natural History of the disease to improve diagnosis.