In the scleroderma community, support groups are more than just a gathering – they are lifelines. They offer connection, understanding, and shared strength. For Voces Boricuas Unidas, the Puerto Rico-based support group, it’s all that and more. It’s a vibrant, culturally relevant space where Spanish-speaking members can express themselves freely, connect through shared experience, and feel seen not only as patients, but as people with rich identities and shared roots.
Before Voces Boricuas Unidas was founded, the National Scleroderma Foundation had no official presence in Puerto Rico through support groups. For many members, joining this group marked the very first time they met someone else with the same diagnosis. Marisol González, an active member, captured this feeling perfectly:
“When you are diagnosed with this disease, you believe that the world falls apart. You don’t know anyone who is going through it. [Now] I feel accompanied on this road. I do not feel alone!”
The group is facilitated by Monica Ramirez, a longtime scleroderma advocate who also facilitates the national Spanish-language support group Conexión en Español. Since launching the Puerto Rico group in October 2024, Monica’s warm leadership and deep understanding of the community’s needs have helped create a safe, trusted space for connection, growth, and learning.
Held entirely in Spanish, meetings are tailored to reflect the local culture and highlight accessible resources, healthcare professionals, and services in Puerto Rico. The group meets monthly, offering not only emotional support but also educational sessions throughout the year. With over 20 active members including caregivers and those newly diagnosed, the group is blossoming into a powerful support network.
“Meeting with people who truly understand what you’re going through is essential,” Marisol said. “The support of the group has been fundamental for me. The educational talks have been incredibly valuable.”
This has been made possible through the dedication of Monica Ramirez and the ongoing support of Lorraine Biaggi, Executive Director of the Florida & Puerto Rico Chapter of the National Scleroderma Foundation. Monica’s lived experience with scleroderma fuels her empathy and purpose, while Lorraine’s advocacy ensures that the voices of the Puerto Rican community are heard, included, and empowered.
Together, their efforts have transformed Voces Boricuas Unidas into more than just a group it is a beacon of solidarity, education, and hope. It’s amplifying the voices of people with scleroderma in Puerto Rico, shining a spotlight on the importance of culturally relevant care, and building bridges between the island and the broader scleroderma community.
Through compassion, community, and unwavering dedication, Voces Boricuas Unidas is charting a more connected and equitable path forward not only for Puerto Rico, but for all people living with scleroderma.
To learn more about Voces Boricuas Unidas or to join a future meeting, contact floridaprchapter@scleroderma.org.
¿Prefiere leer en español? Read the Spanish version of this article here: Voces Boricuas Unidas – National Scleroderma Foundation