Gottheimer hosts sarcoidosis roundtable in Closter, highlights push for research and awareness
CLOSTER, N.J. (Bergen County) — U.S. Rep. Josh Gottheimer convened a roundtable April 24 with doctors, researchers, advocates and patients to discuss sarcoidosis, a rare inflammatory disease affecting an estimated 150,000 to 200,000 Americans.
The event, held during Sarcoidosis Awareness Month, brought together medical experts from Englewood Health, Hackensack Meridian Health, Robert Wood Johnson University Hospital, Valley Health System and the Hospital for Special Surgery, along with representatives from the Foundation for Sarcoidosis Research and patients from across New Jersey.
“During Sarcoidosis Awareness Month, it’s critical that we bring together the voices on the front lines — doctors, researchers, advocates, patients, and families — to help shape better policy and ultimately save lives,” said Congressman Gottheimer (NJ-5). “Behind every statistic is a person, a family, and a story. We need more urgency, more research, and more action.”
Gottheimer said the issue is personal, noting his mother died from the disease in 2018.
“Like so many families, we lived through the confusion, uncertainty, and frustration that come with a disease that is too often underdiagnosed and under-researched,” said Gottheimer. “My mom fought every day with strength and resilience, but like so many patients, she didn’t have the options we’re fighting to create today.”
Sarcoidosis can affect multiple organs and often has no known cure. Officials said more than 90% of rare diseases lack approved treatments.
During the discussion, participants highlighted challenges including delayed diagnoses, limited treatment options and barriers to clinical trials, while calling for increased awareness and funding.
Gottheimer also outlined several bipartisan initiatives aimed at improving outcomes for patients, including the Congressional Sarcoidosis Caucus, a broader rare disease legislative package, and proposals to expand research funding and clinical trial participation.
He said he will continue working with medical professionals, advocates and lawmakers to advance policies supporting those living with sarcoidosis and other rare diseases.
