On July 9th and 10th, Noelia Foundation participated in the scientific CMD seminar plus a patient and families meeting, which took place in the Vall d’Hebrón University Hospital. The event was lead by Dr Carsten Bönnemann, neuropediatrician and expert geneticist in Congenital…
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.…
Fundación Noelia, for children suffering Congenital Muscular Dystrophy (CMD) caused by deficit in collagen VI, with NIH (NINDS) National Institute of Health from United Estates have signed a collaboration agreement to get further with the investigation about CMD caused by…
This year the Dueke Goethe Executive MBA 2009 annual reunion took place in Hamburg, Germany. In the event, they organized a tombola to support Fundación Noelia: Children against Congenital Muscular Dystrophy due to the lack of Collagen VI and collected…
Noelia Foundation was present on 31 March 2016 at the opening of the EURORDIS headquarters in Barcelona (European Organisation for Rare Diseases) in the modernist enclosure of Hospital Santa Creu and Sant Pau. EURORDIS will be located at Apolonia’s Pavilion.…
On Sunday 29th November we attended the Mercat del Trasto market in Barberà. We also sold our solidarity products and raffled some items; the winning numbers were: • Alabaster pestle and mortar: 1131 (we already have the picture with the winner)…
The hospital porters of Tarragona’s Joan XXIII Hospital organised a paddle tennis tournament that took place on the afternoon of the 14th of November. The participants in the tournament cooperated with us by purchasing 36 T-shirts. We would like to…
On the 24th of October 2015, in Mataró, the members of the circus Cronopis organised a charitable cabaret to raise funds for our foundation. We met great artists and enjoyed a wonderful show. We would like to thank all the artists…
