Foundation for Sarcoidosis Research
Sarcoidosis is a rare inflammatory disease that is characterized by the formation of granulomas in one or more organs and when left unchecked, chronic inflammation can become fibrosis which can lead to permanent tissue scarring and organ failure.
Patient leader Mary McGowan recognized that healthcare was not doing a sufficient job to address the unique challenges and barriers to good care experienced by underserved populations. As a result, over the last 30 years, she has created and driven programming designed to ensure that diverse patient representation in understanding is at the center of nonprofit advocacy. She believes the only path forward for rare diseases is through innovative collaboration and full representation of all impacted by a disease, with a particular emphasis on creating avenues for representation of underserved individuals living with complex chronic health conditions.
Sarcoidosis disproportionately affects African Americans and impacts this population more chronically and severely than other groups through barriers associated with treatment, late diagnosis, and limited enrollment in clinical trials. As part of the Rare As One Network, FSR aims to explore ways to overcome these barriers, develop possible solutions to improve care and patient outcomes in African American patients, and share findings with the healthcare community.