National Reference Center for Rare Diseases and Congenital Anomalies in Uruguay

May 2022 – December 2024

    • Health Technology Assessment and Health Economics Projects, Center for Implementation and Innovation in Health Policies Projects
    • Developing

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.