Frank Rivera, Founder of Sarcoidosis of Long Island and Stronger Than Sarcoidosis and patient advocate, discusses how his organization fulfills the unmet needs of sarcoidosis patients.
Sarcoidosis is a rare inflammatory disease characterized by the development and growth of tiny lumps of cells called granulomas. If these granulomas grow and clump together in an organ, they can affect the organ’s structure and function. Overtime, this can lead to permanent scarring or thickening of the organ tissue, called fibrosis. Although the granulomas can be found in almost any part of the body, they occur most commonly in the lungs and lymph nodes. Signs and symptoms of sarcoidosis vary based on the location of the granulomas and the severity of the condition. The exact cause of sarcoidosis is unknown.
Following years of misdiagnosis and limited access to resources, Mr. Rivera started Sarcoidosis of Long Island to help sarcoidosis patients gain access to information, mental health support, and advocacy.
Currently, there are a few ongoing sarcoidosis clinical trials.
For more information, visit https://www.sarcoidosisofli.org/
To learn more about sarcoidosis and other rare hematologic disorders, visit https://checkrare.com/diseases/hematologic-disorders/