Fundación Noelia is a Spanish non-profit organization, with an international scope, which gathers and represents patients and their families.
A non-profit organization, established in November 2015, based in Catalonia, which was founded by the parents of Adrià, a child diagnosed at 3 years of age, of this minority disease, degenerative at the muscular level and without cure to today.
An entity that works directly with the scientific community both nationally and internationally, with the objectiveof promoting and financing lines of research that can contribute to the development of treatments for the care of this disease, as well as, in the knowledge Of the same.
We accompany families and those affected throughout all stages of the disease and create a structure of mutual support between them, encouraging their participation in the entity itself, in order to improve their quality of life.
Currently Fundación Noelia, supports different research projects both in Spain and in the US, has managed to start the creation of a National Registry of affected persons in the CIBERER database and accompanies families and affected persons from different parts of the world.
Maria Borrell