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PS 416

“Para establecer la “Ley de la Oficina Enlace para el Apoyo y Registro de las Personas con Enfermedades Raras”, adscrita al Departamento de Salud, a los fines de recopilar, mantener y actualizar un registro oficial de las personas con enfermedades raras en la Isla; disponer su funcionamiento; determinar sus deberes, facultades y responsabilidades; y para otros fines relacionados.”

2025-2028 Session

Puerto Rico proposes creating a government registry of rare disease patients to improve tracking and resource coordination, but the commission rejected it, citing likely concerns over privacy, costs, and implementation viability.

Comisión no recomienda aprobación de la medida
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Bill Summary · PS 416

Legislative bill overview

Bill PS 416 establishes a "Liaison Office for Support and Registry of Persons with Rare Diseases" within Puerto Rico's Department of Health. The office would compile, maintain, and update an official registry of individuals with rare diseases on the island while defining its operational structure, duties, powers, and responsibilities.

Why is this important

Rare disease patients often face diagnostic delays, fragmented care, and limited access to specialized treatment because their conditions are uncommon and poorly tracked. A centralized registry could improve epidemiological data collection, help patients connect with resources, and enable better healthcare planning for vulnerable populations with conditions affecting small numbers of people.

Potential points of contention

  • Data privacy and protection concerns: Creating a government registry of individuals with specific diseases raises questions about medical confidentiality, data security, and potential discrimination or stigmatization
  • Implementation costs and resource allocation: Establishing and maintaining a registry requires sustained funding, trained personnel, and infrastructure—potentially competing with other health priorities during Puerto Rico's fiscal challenges
  • Registry effectiveness and scope: Unclear whether mandatory reporting from healthcare providers will be required, how participation incentives work, and whether the registry will actually connect patients to tangible support services beyond data collection

Compiled from official sources — confirm details with the bill’s official record.

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