On January 24, 2026, our Florida and Puerto Rico Chapter successfully hosted Scleroderma Insights, its first in-person scleroderma educational event in Puerto Rico.
The program was held at the Dr. José Madera Fernández Amphitheater at Dr. Ramón Ruiz Arnau University Hospital (HURRA) in Bayamón, Puerto Rico, in collaboration with the Pulmonary Hypertension Association (PHA) and the Puerto Rico Asthma Coalition, with support from Alivia Specialty Pharmacy.
Nearly 60 patients and caregivers attended the in-person education event, demonstrating strong community engagement and demand for scleroderma education resources.
Educational presentations were delivered by Dr. Grissel Ríos, rheumatologist, and Dr. Álvaro Aranda, pulmonologist, who addressed key topics related to diagnosis, disease management, and associated complications of scleroderma.
The program also included a patient panel featuring Lourdes Pérez, a patient living with scleroderma, and María Margarita Rosario, a patient living with pulmonary hypertension. Their testimonies provided meaningful insight into the lived patient experience and underscored the importance of comprehensive, patient-centered care. The panel was moderated by Mónica Ramírez, patient advocate and support group facilitator. Doris Cáceres Schumick supported patient engagement efforts and facilitated enrollment in the scleroderma patient registry.
As a direct outcome of the event, ten new members joined the Voces Boricuas Unidas support group, highlighting the tangible impact of in-person education on community connection and sustained patient support.
Reflecting on the impact of the event, Mónica Ramírez shared, “Scleroderma Insights represents a significant milestone in strengthening the scleroderma community in Puerto Rico. The success of this event reaffirms the National Scleroderma Foundation’s commitment to expanding high-quality, in-person educational initiatives and fostering meaningful collaboration across the island!”
The event received media coverage from BeHealth, Medicina y Salud Pública Magazine, and Public Health Latam, expanding visibility and public awareness across Puerto Rico and Latin America!