RELEASE: Gottheimer Hosts Sarcoidosis Roundtable with Patients, Advocates, and Medical Experts

Resources / Press Share on RELEASE: Gottheimer Hosts Sarcoidosis Roundtable with Patients, Advocates, and Medical Experts Continues to Champion Rare Disease Research, Funding, and Advocacy Apr 28, 2026 Press Above: Gottheimer hosts Sarcoidosis roundtable with leading doctors, researchers, advocates, local electeds, patients, and families. CLOSTER, NJ — April 24, 2026, U.S. Congressman Josh Gottheimer (NJ-5) hosted a roundtable in Closter with the leading doctors, researchers, advocates, local elected officials, patients, and families to discuss sarcoidosis, a rare and often misunderstood inflammatory disease that affects an estimated 150,000 to 200,000 Americans. The roundtable brought together 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 (FSR) 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 shared that the issue is deeply personal, having lost his mother, Gwenn, to sarcoidosis in 2018 after years of battling the disease. “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 affects multiple organs and bodily systems, and in many cases, has no known cure. More than 90 percent of rare diseases still lack proper approved treatments. As part of his efforts in Congress, Gottheimer highlighted several bipartisan initiatives aimed at accelerating research and improving patient outcomes: The Bipartisan Congressional Sarcoidosis Caucus — Gottheimer launched with Congressman Max Miller (R-OH) to raise awareness, drive research, and improve care for patients. Bipartisan Rare Disease Legislative Package — During Rare Disease Week Gottheimer introduced a rare disease package to accelerate cures, expand clinical trials, and improve access to treatments, including: Cameron’s Law — Gottheimer introduced legislation to fully restore the Orphan Drug Tax Credit. The legislation is named after 8-year-old Cameron Hyman of Wyckoff, New Jersey, who was diagnosed with Sanfilippo Syndrome, a rare genetic disease that affects the central nervous system. Currently, there are no FDA-approved treatments for Sanfilippo Syndrome. Despite scientific advances, more than 90 percent of rare diseases still do not have therapies or treatments. Cameron’s Law would reverse cuts made under the 2017 Tax Hike Bill that reduced the Orphan Drug Tax Credit by half, a change that has slowed innovation and made treatments for rare diseases even harder to develop and access. By restoring the full Orphan Drug Tax Credit, Cameron’s Law will incentivize life sciences companies to accelerate research and development for orphan diseases. The bipartisan legislation will also help grow New Jersey’s talent pipeline for high-quality life sciences jobs through expanded training partnerships and apprenticeship programs, ensuring the state remains a national leader in biotechnology and medical innovation. Gwenn’s Law — Named in honor of his mother, this bill would fund recruitment and public awareness campaigns to increase the number of women in NIH clinical research trials, especially rare diseases, and increase the number of women in federal bleeding disorder programs. It also creates a task force between HHS, NIH, FDA, CMS, and the private sector to produce a report on rare diseases that disproportionately impact women, helping ensure more funding goes towards those diseases and conditions. Increased NIH Funding Advocacy — Since 2019, Gottheimer has pushed to boost funding for sarcoidosis research through the National Heart, Lung, and Blood Institute. These dollars would be used for more research to find better treatments, more comprehensive screenings, and ultimately a cure. Protecting Rare Disease Designation — Ongoing work with the FDA to ensure sarcoidosis maintains its classification as a rare disease, critical for research investment and patient access to programs. The Congressman emphasized the importance of collaboration between policymakers and those directly impacted by the disease. Participants discussed challenges, including delayed diagnoses, limited treatment options, barriers to clinical trials, and the need for greater awareness and funding. Gottheimer thanked the participants for sharing their experiences and pledged to