Patient Advocate Foundation outlines 1-800 support line and case-management services for rare disease patients

Erin Braggia, executive vice president for patient services and navigation at the Patient Advocate Foundation, briefed the RDAC on the organization's rare-disease care line and case-management services available to residents nationwide, including Connecticut.

The nut graf: The Patient Advocate Foundation offers telephonic case management to help patients navigate insurance, disability applications, appeals and medical billing, and operates a specialized rare-disease care line to route callers to staff with expertise in the particular complexities faced by people living with rare conditions.

Braggia said the foundation served more than 12,000 patients in 2024, with about half the cases tied to rare diseases. She described the intake and triage process and said the organization helps regardless of income or insurance status. "We help people determine what health insurance options they have, help with applications or enrollment, assist with understanding the benefits that they currently have and the potential out of pocket costs," Braggia said, and she summarized services ranging from appeals support to mapping charitable assistance for premiums and other medical costs.

The foundation operates on a hotline (listed by Braggia as a national number) with operation hours in Eastern Time and uses telephonic intake to triage callers to case managers specially trained to help people with rare or chronic conditions. Braggia described case studies where her team supported a caller through the transition from Medicaid to marketplace insurance and secured premium help from an external organization.

Ending: Braggia told the RDAC she would share materials and emphasized the foundation's ability to support state-level advocacy by helping individual callers navigate financial and administrative barriers; RDAC members thanked the foundation for its services and said they would follow up on referral pathways.