Yesterday, we bid a final farewell to Josep Maria Canela (l’Agustí), co-founder of the Noelia Foundation. We will always remember him with great esteem and gratitude; his legacy will remain alive in every step we take. We extend our deepest…
On June 6th, the first virtual edition of COL6 DAY took place, an event organized by the Collagene VI Italia association. This event, focused on research into collagen VI-related myopathies and dystrophies, brought together more than 150 participants from different…
On March 7, 2025, the Fundación Noelia had the honor of participating in the Nano Rare Diseases Day, held at the Auditorio Plaza of the Sant Joan de Déu University Hospital in Barcelona. This event, organized as part of World…
The Fundación Noelia has funded an innovative study led by researcher Virginia Arechavala-Gomeza, which takes a step forward in the diagnosis and development of treatments for Congenital Muscular Dystrophy due to Collagen Deficiency VI (CMD COL6). Researchers have created a…
Last December, thanks to the incredible solidarity of so many people, the "Together we make magic, through the power of children" challenge was a resounding success. With the collaboration of magician Albert, the Fortuny Theater in Reus was filled with…
A toast to research! Last Saturday, December 14, the Celler Mas Vicenç de Cabra del Camp gave us an unforgettable day, with a solidarity wine tasting and a tour of its winery. Why is this collaboration so special? Celler Mas…
The Importance of Patient Participation in Rare Disease Research This event, organized by FEDER (Spanish Federation of Rare Diseases), focused on the crucial role of patient participation in research. The roundtable discussion, "Patient Participation in the Research Process," featured Dr.…
Below we leave you the article published by Dr. Astrid Brull, Member of the NINDS-NIH (USA) Research team, in the American Society of Gene & Cell Therapy with the title "Optimized allele-specific silencing of the dominant-negative COL6A1 G293R substitution causing…
In a recent article, Biopharma Reporter magazine highlights the significant advances that have occurred in recent years in the field of gene therapy, transforming it from a futuristic promise to a concrete reality with treatments already available. These represent a…
On World Rare Disease Day, we raise our voices to shed light on collagen VI congenital muscular dystrophy and all rare medical conditions. At the Noelia Foundation we participate in different events to make the disease visible: II Conference on…
