FUNDACION ATROFIA MUSCULAR ESPINAL COLOMBIA SARA Y SOFIA
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Mission Statement
Famecol S&S works for The awareness... From society and public opinion, towards the problem of living with a rare disease. Represent... To those affected before the public powers to claim and defend their rights, as well as to demand the establishment of political and management lines, which promote research, dissemination and the creation of medical specialties, reference centers, as well as the implementation of resources socioeconomic support assistance. Presence and integration... In the entities that deal with the problem of rare diseases at a national and international level.
About This Cause
Sara and Sofia are two sisters of Colombian parents, born in Spain, they are the inspiration for the creation of the AME Foundation in Colombia, Famecol is a non-profit organization, within your vision. Sensitize society about spinal muscular atrophy. Vision: Inform and guide those affected by spinal muscular atrophy (SMA), and their families. Support and defend the normalization of life, of people with SMA, throughout its different stages. Promote the professional teams (doctors, health personnel, physiotherapists, psychologists, nutritionists, speech therapists) necessary at all times; and that they have the appropriate technical and material means. Nuestro trabajo se rige por los principios de: Responsabilidad, compromiso y transparencia, en todas las actividades y programas que desarrollemos. Tolerancia y respeto. Profesionalidad, como expresión de la motivación y competencias de la junta y el equipo técnico