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Fundación Noelia

Children against Collagen VI Congenital Muscular Dystrophy

Is a Spanish non-profit organization, with an international scope, which gathers and represents patients and their families.

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.


Our Story

Saying out loud that our son is sick and that there is no cure for his illness is the hardest thing I have ever done. Everyone knows that rare diseases exist  but never expect to see that happening to a family member.

Know our story



  • The main purpose of the Foundation is to support scientific research on this disease to prolong the life of these children and find out a treatment or cure for the disorder.
  • To increase awareness of this unknown disease in society.
  • Raise funds for researchin order to conduct clinical trials.
  • Gather the maximum number of patients with  Collagen VI – Congenital Muscular Dystrophy  and their families, to join efforts in finding solutions to fight the evolution of the disease and understand its nature.  Patient registries are vital for this purpose.


Board Members

The Fundación Noelia is directed by the board of trustees, which is made up of the following people:


The Noelia Foundation, Children against Collagen VI Congenital Muscular Dystrophy was established on Aug. 13th, 2015 by public deed number 774, being registered with the number 1766 in the Registry of Foundations by Ministerial Order of 09/21/2015. Registration implies therecognition of the general interest of its purpose.

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