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)…
Fundación Noelia makes the second contribution of $12,500 to the project led by Dr.Bönneman's team at the NIH (USA) "Optimization of viral vectors for the effective gene delivery to muscle tissue cells". This is a fundamental project to be able…
Closing the year it is time to do the numbers and see what this 2022 has given. From Fundación Noelia we have invested €173,853.49 during 2022 in the research of Congenital Muscular Dystrophy caused by dèficit in Collagen VI, specifically…
Since last November 2022, Fundación Noelia has been part of EURORDIS, which allows us to have a voice and include ColagenoVI in its forums and workshops. What is EURORDIS? EURORDIS is a patient-driven, non-governmental alliance of patient organizations and…
