Panama Seeks to Guarantee Social Protection and Health Service Access for Patients with Rare Diseases.

Panama has only 500 people with a confirmed diagnosis of a rare disease, but projections based on international prevalence rates raise that figure to 240,000 inhabitants.

The gap between the official figure and the estimate reveals an incomplete information system. The country does not yet have a consolidated national registry for this group of pathologies. Unlike dengue, malaria, mpox (formerly called monkeypox) or hantavirus, which are systematically monitored and reported, rare diseases lack detailed quantification in official statistics.

The Ministry of Health (MINSA) already has a Care Program for people with rare, infrequent and orphan diseases. However, the absence of a mandatory reporting system limits the true extent of the problem.

The National Assembly gave a third debate to Project No. 257, which modifies and adds articles to Law 28 of 2014. That law guarantees social protection and access to health services for patients with rare diseases, but several of its provisions were never implemented.

Now, Project 257 updates the 2014 legal framework to try to improve the prevention, diagnosis, treatment and research of rare diseases. It also regulates the functioning of the Intersectoral Commission and establishes mechanisms to incorporate new pathologies into the official list.

Among the points pending legal validity are provisions on medicines, diagnosis, screening and the creation of an official patient registry. The proposal acknowledges that these conditions constitute a problem of special interest in health due to their low prevalence, the complexity of their manifestations, and the high cost of their care.

One of the central aspects of the reform requires all health establishments, public and private, to report annually to the Ministry of Health (MINSA) information on cases of rare diseases.