National Reference Center for Rare Diseases and Congenital Anomalies in Uruguay
May 2022 – December 2024
Period: May 2022 – December 2024
Researchers – Phase I:
- Dr. Adolfo Rubinstein
- Dr. Analía López
- Prof. Dr. Andrés Pichon-Riviere
- Prof. Dr. Federico Augustovski
- Dr. Diana Fariña
- Dr. Sebastián García Martí
- Lic. Cintia Cejas
- Lic. Maisa Havela
Researchers – Phase II:
- Dr. Adolfo Rubinstein
- Dr. Analía López
- Lic. Celeste Rivas
- Dr. Camila Volij
- Dr. Diana Fariña
- Lic. Cintia Cejas
- Lic. Maisa Havela
- Lic. Sofia Pirsch
- Dr. Sofia Landi
Objective: Development and implementation of a comprehensive health care plan for people with rare diseases and congenital anomalies in Uruguay, with the aim of establishing a National Reference Center for rare pathologies.
Summary: This project proposes support and technical advice at all stages of the development and implementation of a strategic care plan for people with congenital anomalies and rare diseases.
The project will be carried out in four phases: 1) Diagnosis of the baseline situation and challenges and opportunities for the implementation of lines of action; 2) Design and development of the implementation plan for a network of services and improvement proposals; 3) Support for the implementation plan of the service network; 4) Post-implementation evaluation, monitoring and audit.
Financing: Social Security Bank (BPS) of Uruguay.