April officially recognized as Sarcoidosis Awareness Month in US
Foundation for Sarcoidosis Research is also celebrating its 25th year
April has officially been recognized as Sarcoidosis Awareness Month in the U.S., marking a significant milestone for the community and its advocates, according to the Foundation for Sarcoidosis Research (FSR) — which also celebrates its 25th anniversary this year.
The recognition by the U.S. Congress was spearheaded by Danny K. Davis, a congressman from Illinois who drew attention to the need for more research, greater public awareness, and improved access to care for the approximately 1.2 million people living with sarcoidosis worldwide.
“I am honored to lead the efforts, along with the Foundation for Sarcoidosis Research (FSR), in securing congressional recognition of Sarcoidosis Awareness Month,” Davis said in a press release from the foundation.
Sarcoidosis is an inflammatory disease marked by the formation of clusters of immune cells, called granulomas, in the body. These granulomas can disrupt normal organ function, leading to a wide range of symptoms, most commonly affecting the lungs, though the skin, eyes, heart, and liver may also be involved.
While some cases resolve on their own, others become chronic. There is no cure for sarcoidosis, but available treatments can help relieve symptoms and prevent long-term damage.
Sarcoidosis Awareness Month to focus on ‘visibility, education, and action’
The congressman, the FSR, and other advocates had long campaigned for an official awareness month designation.
“Congressional recognition of Sarcoidosis Awareness Month is a powerful signal that this disease, and the people it affects, can no longer be overlooked,” said Mary McGowan, CEO of FSR. “Too many patients still go years without a diagnosis, too many families are left with unanswered questions, and too many providers lack the tools they need to offer proper care.”
McGowen added: “This month is about changing that through visibility, education, and action.”
Congressional recognition of Sarcoidosis Awareness Month is a powerful signal that this disease, and the people it affects, can no longer be overlooked.
Both Davis and the FSR also acknowledged another win this past year for people with chronic and rare diseases: a clarification from the U.S. Department of Labor confirming that participation in clinical trials qualifies for leave under the Family and Medical Leave Act (FMLA).
This clarification, which followed outreach efforts by FSR and its partners, ensures that — like all people affected by medical conditions — sarcoidosis patients and caregivers have protected access to care and research without the risk of losing their jobs.
“I have been proud to work alongside FSR and my congressional colleagues on the important effort in securing clarity from the Department of Labor that guarantees job protection under FMLA for all Americans who wish to enroll in clinical trials,” Davis said.
FSR holding anniversary events throughout the year
This year’s theme for Sarcoidosis Awareness Month, led by the FSR, was “Facing Sarcoidosis Together.” Its focus was on the power of community, support, and advocacy in navigating the challenges of the disease.
The campaign featured public awareness initiatives, webinars, and community fundraisers, and held special significance, according to the FSR, as it coincided with the foundation’s 25th anniversary year.
To celebrate this legacy and look toward the future, the nonprofit has organized a series of special anniversary events and the release of new reports outlining both advances and ongoing needs in sarcoidosis care and research.
Local FSR meet-ups and walks, held in partnership with members of the FSR Global Sarcoidosis Clinic Alliance, are scheduled to take place across the U.S. throughout the year.
In June, the Global Virtual Sarcoidosis Summit will connect patients, caregivers, researchers, and clinicians from around the world for interactive sessions, networking opportunities, and updates on the latest research advancements.
Later in the fall, FSR will host its Congressional Hill Day and Briefing. Hill Day events usually bring together advocates, patients, and organizational leaders to meet with lawmakers in Washington, D.C., share personal stories, and work to advance policy priorities and increase research funding.
The celebrations will culminate with the 25th Anniversary Gala on Oct. 22 in Chicago.
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