One more year Noelia Foundation present in the Day of families with Neuromuscular Diseases, organized by the NRM team of the Sant Juan de Dios Hospital in Barcelona. These have been very rewarding days, since we have seen that the…
The Hospital Sant Joan de Déu, in Barcelona, echoes the new donation of the Noelia Foundation to continue financing the research project "NATURAL HISTORY, DIAGNOSIS AND TREATMENT OF COLLAGEN VI-RELATED MUSCULAR DYSTROPHIES", which enters its second phase of action. Read…
Last July, Noelia Foundation attended the 2019 Congenital Muscle Disease Scientific & Family Conference organized in Chicago by Cure CMD, an event that brought together researchers from around the world to share their experience on these congenital diseases. Once again,…
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…
Bankia supports with 7,800 euros the research project against congenital muscular dystrophy due to collagen deficiency VI of Noelia Foundation. We want to express our sincerest gratitude to Bankia in action, for including us in the Bankia Solidarity Network program…
On March 21, 1919, the novelties were published on the "in vitro" works in patient cells (fibroblasts), using the "pseudo" exon skipping technique. Among the authors, there are the most important experts on Collagen VI worldwide, such as Dr.Bönnemann and…
This donation brings the total amount contributed by the Foundation to the Sant Joan de Déu Children’s Hospital (Barcelona, Spain), over the last two years, to €119,500. The funds have been used to conduct a research project based on the…
Noelia Foundation, children against Collagen-VI Muscular Dystrophy, has been recognized as a representative entity of this pathology in the database of Orphanet (The portal for rare diseases and orphan drugs). Orphanet was established in France by the INSERM (French National Institute for Health…
Yesterday was a great day! We met 6-year-old Valentino and his parents, Rodrigo and Marcia, from Uruguay. They are an exceptional family. After many years of uncertainty and thanks to the recent collaboration of the Noelia Foundation with the Sant…
Noelia Foundation signed an agreement with the Sant Joan de Déu Children’s Hospital to conduct the project "Natural History, diagnosis and treatment of Collagen-VI-related muscular dystrophies". The project is led by Dr. C. Jiménez Mallebrera as principal investigator, and Dr.…
