Who We Are

The Noelia Foundation, children against Collagen VI Congenital Muscular Dystrophyis a Spanish non-profit organization, with an international scope, which gathers and represents patients and their families.

It was established in November 2015, based in Catalonia, by the parents of a boy named Adrià, who, at age 3, was diagnosed of this rare, degenerative muscle disease, which, as of today, has no known cure.

The foundation works closely with the global scientific community, with the aim of promoting and funding research projects that may contribute to the knowledge of the disease and the development of new treatments.

It also provides guidance to patients and families throughout all stages of the disease and creates a support group, encouraging their participation so they may improve their quality of life.


Research support