Sanfilippo Colombia

We are a private non-profit organization founded in March 2019, which seeks the support of different entities that allow us to create awareness, visualization and location of patients and families affected by Sanfilippo Syndrome and other MPS's Mucopolysaccharidoses.

Our Foundation was born from the experience of being the parents of our eldest son, Andrés Esteban, who in October 2016 was finally diagnosed with Sanfilippo Type C Syndrome. During the diagnostic process we realized the lack of an entity in Colombia that could provide us with help and advice.

What we want

Our Mission and vision are focused on helping families affected by a disease such as Sanfilippo Syndrome and other Mucopolysaccharidosis. Help us meet our goals

Mission

Accompany families affected by Sanfilippo and other Mucopolysaccharidoses, providing support and guidance based on our experience to achieve the well-being and services they are entitled to.

Vision

Locate the population and families affected by Sanfilippo Syndrome and other Mucopolysaccharidoses in Colombia and other regions of Latin America, to provide life expectancy for all.

Objectives

Provide guidance to families affected by Sanfilippo Syndrome from our experience.

Advise on the rights of each individual and each family, to obtain access to different benefits that they require and to which they are entitled.

Promote, promote, and support research on issues related to the course of the disease and the well-being of patients and their families.

Generate awareness and knowledge dissemination campaigns.