Fundación Ecuatoriana para Acidemias Orgánicas (FEPAOR) → Organic Acidemia Association

Fundación Ecuatoriana para Acidemias Orgánicas (FEPAOR)

The foundation’s roots trace back to a mother’s fierce fight to save her son, Eithan, who was diagnosed with Propionic Acidemia in 2021 after a lengthy diagnostic odyssey. Faced with a complete lack of local metabolic specialists and dietitians in Ecuador, Isabel chose to turn adversity into action—pursuing a master’s degree in nutrition and partnering with international teams at the NIH and in Pittsburgh to successfully manage his care.

The Urgent Mission in Equador

While Eithan is thriving today thanks to international support, the systemic reality for other metabolic families in Ecuador remains critical:

Diagnostic Delays: Essential tests, like amino acid profiles, must be shipped to Germany, with waiting times often exceeding three months.

Lack of Resources: Specialized metabolic formulas are not commercially available in the country, leaving families completely reliant on international humanitarian donations.

A Critical Need for Education: Because many local healthcare professionals are unfamiliar with acute metabolic management, the consequences can be devastating. Tragically, at least eight diagnosed children in Ecuador have lost their lives in less than a year due to a lack of proper management protocols.

This urgent crisis is exactly why the Fundación Ecuatoriana para Acidemias Orgánicas was born.

Mission

We are a technical and humanitarian organization of Ecuadorian civil society dedicated to transforming the quality of life for people affected by organic acidemia and their families. We achieve this through a model of comprehensive bio-psycho-social accompaniment, promotion and advocacy for early diagnosis, continuing medical education and the articulation of public and private strategic alliances, ensuring the defense of their rights and equity in access to specialized treatments. Vision By 2029, to be the reference organization and central node in Ecuador for the comprehensive approach to organic acidemias and related metabolic disorders. We will be recognized for consolidating an active national patient support network, for promoting inclusive public health policies, and for our sustainability, transparency and methodological rigor in social project management.

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Misión

Somos una organización técnica y humanitaria de la sociedad civil ecuatoriana dedicada a transformar la calidad de vida de las personas afectadas por acidemias orgánicas y sus familias. Logramos esto a través de un modelo de acompañamiento integral bio-psico-social, la promoción e incidencia para el diagnóstico temprano, la educación médica continua y la articulación de alianzas estratégicas públicas y privadas, garantizando la defensa de sus derechos y la equidad en el acceso a tratamientos especializados. Visión Para el año 2029, ser la organización referente y el nodo central en el Ecuador para el abordaje integral de las acidemias orgánicas y trastornos metabólicos afines. Seremos reconocidos por consolidar una red nacional activa de soporte al paciente, por impulsar políticas públicas de salud inclusivas, y por nuestra sostenibilidad, transparencia y rigurosidad metodológica en la gestión de proyectos sociales.