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…
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…
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.…
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…
Noelia Children's Foundation against congenital muscular dystrophy due to Collagen VI deficiency has received support from the “la Caixa” Foundation, through CaixaBank, to promote the “You are not alone” project, which aims to promote a virtual community of affected and…
Thanks to you, Fundación Noelia, achieves one of its goals for 2023 and donates $120,000 to Dr. Bönnemann's team, from the National Institute of Neurological Disease and Stroke, in the USA, a project that establishes two gene therapies based on…
This month of July 2023, from Fundacion Noelia we have delivered the €38,095 that allow us to continue with the research project PERSONALIZED MEDICINE THERAPIES FOR CONGENITAL MUSCULAR DYSTROPHIES. This 2-year project is carried out at the Sant Joan de…
Last April we visited the Biocruces Health Research Institute in Bizkaia, where Fundación Noelia financed the research project "Evaluation and development of personalized therapies for collagen vi-related myopathies", led by Dr. Virginia Arechavala. Within the framework of the collaboration agreement,…
Based on the good results obtained in the previous phase, Fundación Noelia has signed a new agreement with the Hospital Sant Joan de Déu in Barcelona to continue the next phase of the CRISPR project. We are at a time…
We need your help! It all adds up! These funds will make it possible to continue giving continuity to the research projects of collagen6, of the HSJD of Barcelona (Dra.Mallabrera), of the NIH research center in the USA (Dr Bönnemann)…
