Asociación sin fines de lucro que trabaja en beneficio de los niños que sufren enfermedades raras y sin diagnostico. Nuestros principales objetivos son: ayudar tanto a los niños como sus familias, impulsar la investigación, crear un grupo de apoyo psicológico e informativo, dar visibilidad a estas enfermedades, fomentar la convivencia de los niños enfermos y sanos, promover las terapias tradicionales y alternativas y crear conciencia social en torno a esta realidad que cada día golpea mas niños
Our goal is to develop a rare disease research project, focusing this year on those affected by VPS13D, a condition that causes different damage to the motor and muscular system, ataxia, among others, and which has only been identified a few years ago. In Spain at the moment there is only one known case (www.investigacioinparachloe.org) but we are in contact with about 15 more cases around the world. The little ones suffer the most serious damage and at the moment little and nothing is known about how to treat them. Through crowdfunding we are financing a research project that we have called COCOFISHGO and that is developed at the GERMANS TRIAS Y PUJOL RESEARCH INSTITUTE led by its director, DR. MATILLA. Our goal is to find a treatment that stops the motor deterioration that this condition produces in children to give them hope for a better life. Help us get it!!
Pubblicato il
12/10/2017
Data di pubblicazione
16/12/2014
Tipo di gruppo
ONG
Settore:
Aiuto ai pazienti
Bambini e ragazzi
Famiglie
Persone con disabilità
Ricerca
Paese:
Spagna
Regione:
Málaga