“LA CAIXA” FOUNDATION SUPPORTS FUNDACIÓN NOELIA – CHILDREN AGAINST CONGENITAL MUSCULAR DYSTROPHY CAUSED BY COLLAGEN VI DEFICIENCY – TO STRENGTHEN COMPREHENSIVE SUPPORT FOR FAMILIES AFFECTED BY THE DISEASE October 14, 2026 Fundación Noelia, Children Against Congenital Muscular Dystrophy Caused by…
On June 6, 2026, the second edition of Col VI Day took place. This initiative is the result of a global network of patients and institutions seeking to raise awareness of the conditions affecting patients with collagen VI abnormalities. Research…
Fundación Noelia reaffirms its commitment to promoting and supporting scientific research aimed at understanding, treating, and ultimately curing Collagen VI Related Congenital Muscular Dystrophy (COL6-CMD). In this context, participation in international initiatives is essential to accelerate progress in the field.…
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…
