[Congressional Record Volume 172, Number 70 (Tuesday, April 21, 2026)]
[Extensions of Remarks]
[Page E352]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




            RECOGNIZING APRIL AS SARCOIDOSIS AWARENESS MONTH

                                 ______
                                 

                          HON. DANNY K. DAVIS

                              of illinois

                    in the house of representatives

                        Tuesday, April 21, 2026

  Mr. DAVIS of Illinois. Mr. Speaker, I rise today to recognize the 
month of April as Sarcoidosis Awareness Month.
  Sarcoidosis is a rare inflammatory disease characterized by the 
formation of granulomas--tiny clumps of inflammatory cells--in one or 
more organs of the body. When the immune system goes into overdrive and 
too many of these clump's form, they can interfere with an organ's 
structure and function. When left unchecked, chronic inflammation can 
lead to fibrosis, which is the permanent scarring of organ tissue. This 
disorder affects the lungs in approximately 90 percent of cases, but it 
can affect almost any organ in the body.
  Despite increasing advances in research, sarcoidosis remains 
difficult to diagnose with limited treatment options and no known cure. 
Sarcoidosis is considered chronic in people whose disease remains 
active for more than 2 to 5 years; in this population sarcoidosis can 
be debilitating and life-threatening. It is estimated that the 
prevalence of sarcoidosis in the U.S. ranges between 150,000 and 
200,000 with an estimated 1.2 million individuals with sarcoidosis 
worldwide.
  I am proud to have the Foundation for Sarcoidosis Research (FSR) 
based in my district, in the city of Chicago. I have had the chance to 
meet wonderful patient advocates and hear their stories. FSR is 
committed to advancing pivotal research and improving the lives of all 
impacted by sarcoidosis and has funded over 10 million dollars to 
support academic research to better understand the cause, mechanisms of 
progression, and the effective and efficient path to better patient 
outcomes.
  Over the past couple of years, I worked with FSR to address a lack of 
clarity from the Department of Labor regarding whether or not clinical 
trial participation was a permissible use of leave under the Family and 
Medical Leave Act (FMLA). Like other chronic and rare disease patient 
populations, clinical trial access is critically important for patients 
with sarcoidosis, as there is no cure and there is a lack of treatment 
options. When requesting time off to participate in clinical trials, 
some patients have been denied as HR departments have not interpreted 
clinical trial participation as a permissible use of leave under FMLA. 
I, along with other Congress members and leading stakeholder 
organizations such as FSR, reached out to the DOL to get this 
clarification. Fortunately, the DOL responded confirming that they 
interpret clinical trial participation, when medically necessary, is a 
permissible use of leave under FMLA. It further clarified that both 
patients and caregivers are guaranteed job protection under FMLA, when 
meeting the necessary requirements and choosing to participate in 
clinical trials. This effort extends beyond sarcoidosis and extends to 
all those seeking to participate in clinical trials. I am now working 
to spread awareness of this finding, so employers, employees, HR 
departments, and patients are aware of proper use of leave under FMLA.
  Last year, I was able to join in celebrating the 25th Anniversary of 
the establishment of the Foundation for Sarcoidosis Research. In 
celebration of this accomplishment and years of innovation, empowerment 
and progress, I call on my colleagues to recognize the goals and ideals 
of Sarcoidosis Awareness Month by supporting federal activities that 
improve the lives of patients impacted by Sarcoidosis, and to raise 
awareness and shine a light on the 1.2 million people living with 
Sarcoidosis.