Niños contra la Distrofia Muscular Congénita por déficit de colágeno VI
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.
GIVE HIM STRENGTH, GIVE HIM LIFE!
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.
Who is who?
Step by step
- 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.
External consultants are members of the Scientific Committee of the Foundation Noelia. They are directly involved in studying and researching this disease to improve the quality of life of these children and to find a cure. It is urgent to investigate this disease because the muscle involvement is progressive leading to a very important paralysis.
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.