The Foundation for Sarcoidosis Research (FSR), the leading international organization dedicated to finding a cure for sarcoidosis and improving care for patients, is proud to announce this year’s theme for April’s Sarcoidosis Awareness Month: Say Sarcoidosis. Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease of unknown cause characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. Approximately 5-10% of all patients diagnosed will suffer from advanced sarcoidosis. Sarcoidosis affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body and in more advanced or chronic cases can impact multiple organs at the same time. Despite its prevalence, sarcoidosis remains underrecognized and underdiagnosed, leading to delayed treatment and increased morbidity. It is estimated that 1.2 million people are affected worldwide. The Say Sarcoidosis campaign aims to shatter the silence and shine a light on the importance of speaking up about this often-misunderstood condition.
“Increasing awareness about sarcoidosis is crucial to ensure timely diagnosis and appropriate management,” says Mary McGowan, Chief Executive Officer at FSR. “Through the Say Sarcoidosis campaign, we aim to empower both patients and healthcare professionals to speak up about the signs and symptoms of sarcoidosis, leading to better patient outcomes and improved quality of life for those impacted by sarcoidosis.”
Throughout Sarcoidosis Awareness Month, FSR will host a series of educational events and webinars aimed at arming patients, caregivers, and healthcare professionals with knowledge about sarcoidosis, its management, and available support services, as well as facilitate connections within the sarcoidosis community, providing a platform for individuals to share their experiences.
In addition, FSR has launched a Say Sarcoidosis fundraising campaign that will help support FSR’s groundbreaking sarcoidosis research and the development and maintenance of support programs, patient education initiatives, and advocacy efforts. FSR is also holding a #PostInPurple social media challenge, encouraging everyone to join the conversation on social media using the hashtag #SaySarcoidosis and share photos of themselves in purple, the international color representing sarcoidosis.
“We invite individuals, organizations, and communities worldwide to unite in the fight and Say Sarcoidosis,” adds Mary McGowan. “Together, we can make a difference by amplifying our voices to raise awareness, improving diagnosis and disease management, increasing funding for much-needed research, and reducing barriers to help those impacted by sarcoidosis to thrive.”
For more information about Sarcoidosis Awareness Month and how to get involved with FSR’s Say Sarcoidosis campaign, please click here.