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Commission approves creation of national cadastre to monitor cases of rare cases
09/25/2025 | Murilo Souza | News Camera Agency
Draft law is being analyzed in the Chamber of Deputies
The Health Commission of the Chamber of Deputies approved the Draft Law 109/25, which creates the National Rare Doenças Monitoring System in the Unified Health System (SUS). A dose is considered rare when less than 65 per 100 thousand people live under conditions.
Accordingly, your managers will be responsible for maintaining and updating information on rare cases, including people who:
I will never have any problems or health problems;
têm positive results in exams logo após or birth;
They are only diagnosed with rare diseases at any stage of life.
The text makes it clear that the manipulation of the information inserted in the system must follow the directions of the General Law on the Protection of People's Data (LGPD).
The rapporteur, Deputy Rosangela Moro (União-SP), recommended the approval of the project, authored by Deputy Thiago Flores (Republicans-RO), without alterations.
“A national system for monitoring rare items, aligned with epidemiological surveillance, functions as a tool that combines technology, transparency and rationality with public management, with the potential to reduce fraud, guide more effective public policies and guarantee the rights of people with rare items,” he highlighted.
Finally, the project establishes that prior registration in the system is a necessary condition for:
access to expensive (high cost) remedies provided by government or by health plan;
participate in social programs that require commitment to rare training;
Participation in clinical research on rare diseases, allowing patients to have access to innovative treatments.
According to the author, there are approximately 13 thousand people with some rare diseases in Brazil, with something between 6 thousand and 8 thousand different diseases, so, most of the time, sometimes, not at most, some dozens of people.
Next stages
This proposal will also be analyzed, in a conclusive manner, by the Commission of Constitution and Justice and Citizenship.
To change the law or text, it must be approved by the Chamber and the Senate.
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