The announcement was made by the Secretary of State for Health, Ana Povo, during the 5th National Meeting of the Scientific Council for Rare Diseases, RD-Portugal. The program's creation aims to ensure the execution and monitoring of 25 priority actions defined in the 2025-2030 strategy.
The goal is for the program to aggregate knowledge, bring institutions closer, involve professionals, and maintain ongoing dialogue with associations and individuals living with rare diseases. Intervention areas include improving diagnosis, reducing the time to disease identification, and patient referral.
Research and innovation are also priorities, through the valorization of reference centers, participation in European networks, and the development of knowledge and therapeutic opportunities.
The European definition of a rare disease corresponds to diseases with a prevalence not exceeding 5 per 10,000 inhabitants. It is estimated that in Portugal, between 600,000 and 800,000 people have a rare disease.
