WASHINGTON, D.C. — U.S. Rep. Josh Gottheimer announced Monday the creation of a bipartisan Congressional Sarcoidosis Caucus aimed at raising awareness and advancing research for the chronic inflammatory disease that claimed his mother’s life.
Gottheimer, D-N.J., said he launched the caucus after losing his mother, Gwenn, to sarcoidosis in 2018. The disease, which has no cure, can affect multiple organs — most commonly the lungs and lymph nodes — and in severe cases can lead to organ failure and death.
“Sarcoidosis is a devastating disease that too often goes undiagnosed and under-researched,” said Congressman Josh Gottheimer (NJ-5). “After losing my incredible mom to this illness, I know how urgent it is that we do more to support patients, families, and researchers working toward better treatments and, ultimately, a cure.”
Gottheimer has led appropriations requests since 2019 to expand funding for sarcoidosis research through the National Institutes of Health.
An estimated 150,000 to 200,000 Americans are living with sarcoidosis, with about 27,000 new cases diagnosed each year. Symptoms can include coughing, shortness of breath, chest pain and severe fatigue. While some patients respond to existing medications, many do not, highlighting the need for expanded research and development of new treatments.
Rep. Max Miller, R-Ohio, joined Gottheimer in launching the caucus.
“I am honored to join the bipartisan Congressional Sarcoidosis Caucus to help shine a light on this devastating rare disease. Too many Americans and their families face the uncertainty and hardship that come with Sarcoidosis, and far too few treatment options exist today. By working together, we can raise awareness, advance critical research, and pursue policies that give hope to patients and move us closer to finding a cure,” said Congressman Max Miller (OH-6).
Advocacy organizations also praised the effort.
“We applaud Congressman Josh Gottheimer for his leadership in launching the bipartisan Congressional Sarcoidosis Caucus. This initiative is a critical step forward for patients and families impacted by sarcoidosis, bringing much-needed attention, research, and hope to a disease that has too often been underdiagnosed or misdiagnosed and overlooked,” said the Life and Breath Foundation.
“Thank you to Congressman Gottheimer and Congressman Miller for their leadership in establishing a sarcoidosis caucus,” said Mary McGowan, President and CEO, Foundation for Sarcoidosis Research (FSR). “This caucus is an exciting effort in building legislative pathways to improve access to care, advance research, and improve the lives of the nearly 200,000 individuals in the US impacted by sarcoidosis.”
The caucus plans to work with the Food and Drug Administration to improve what Gottheimer described as an outdated system and to advocate for additional dedicated federal resources to combat the disease.
