WASHINGTON, D.C. — U.S. Rep. Josh Gottheimer, D-N.J., announced a bipartisan package of legislation aimed at advancing research and treatments for rare diseases during Rare Disease Week, while also launching a new Congressional Sarcoidosis Caucus.
Gottheimer attended the State of the Union address with his sister, Emily, as they honor their mother, Gwenn, who died from sarcoidosis, a rare inflammatory disease.
In her memory, Gottheimer introduced a series of bipartisan bills focused on increasing research funding, strengthening clinical trials and restoring incentives for drug development targeting rare diseases.
“Emily and I know firsthand the devastating toll Sarcoidosis can take on families,” said Congressman Josh Gottheimer (NJ-5). “We lost our wonderful mom to this cruel disease. That’s why we’re fighting with urgency to increase research funding, improve clinical trials, and support the patients, families, and researchers working toward better treatments — and ultimately a cure. During Rare Disease Week, and in memory of our mom, we’re recommitting ourselves to ensuring that no family feels alone in this fight.”
“It’s a terrible feeling to have no answers when a loved one is suffering. When they look to you,” said Emily Gotttheimer. “Patients suffering from rare diseases cannot wait. We have to cut through red tape, invest in research, and find cures. This is about giving families hope — and delivering results.”
The newly formed bipartisan Congressional Sarcoidosis Caucus will focus on raising awareness of the disease, advocating for increased federal research funding and working with the Food and Drug Administration to modernize regulatory processes affecting treatment development.
Gottheimer’s legislative package includes “Gwenn’s Law,” which would increase the participation of women in clinical research trials for rare diseases and blood disorders; “Leo’s Law,” which would extend exclusivity for rare disease clinical trials delayed during the COVID-19 pandemic; a resolution recognizing the significance of Charcot-Marie-Tooth disease and calling for additional federal research funding; and “Cameron’s Law,” which would restore the Orphan Drug Tax Credit to its previous level after it was reduced in 2017.
According to Gottheimer’s office, the measures are designed to accelerate research, strengthen clinical trials, restore incentives for drug development and expand patient access to treatments.
Sarcoidosis is an inflammatory disease that can affect multiple organs, most commonly the lungs and lymph nodes. Millions of Americans live with rare diseases, many of which lack widely available treatment options.
