RELEASE: During Rare Disease Week, at State of the Union, Gottheimer Focuses on Bipartisan Package of Legislation to Find Cures

Above: Gottheimer and his sister Emily with their mother, Gwenn Feldman, who passed from Sarcoidosis.

WASHINGTON, D.C. - Today, in honor of Rare Disease Week, U.S. Congressman Josh Gottheimer (NJ-5) announced a bipartisan package of legislation to help find cures. Gottheimer will be joined at the State of the Union address by his sister Emily, as they honor their mother, Gwenn, who passed from Sarcoidosis. Gottheimer and his family continue to fight to boost research and funding to find rare disease treatments and cures, and to support other families battling rare diseases.

Gottheimer and his sister lost their wonderful mother Gwenn to Sarcoidosis, a rare and often misunderstood inflammatory disease. In her memory, and in honor of the millions of Americans living with rare diseases, Gottheimer also announced the launch of the new bipartisan Congressional Sarcoidosis Caucus and the introduction of a package of bills to combat rare diseases and boost research and development for treatments.

"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 new bipartisan Congressional Sarcoidosis Caucus will work to raise awareness about Sarcoidosis, advocate for increased federal research funding, and partner with the FDA to modernize outdated systems that slow progress for patients in desperate need of treatment options.

Gottheimer is advancing a package of key bipartisan initiatives to support the rare disease community:

• Introducing "Gwenn's Law" to increase the number of women participating in clinical research trials for rare diseases and blood disorders, helping ensure treatments are safe and effective for everyone.
• Leo's Law to extend exclusivity for rare disease clinical trials that were stalled during the COVID-19 pandemic, ensuring promising treatments can continue moving forward and reach patients faster.
• Resolution Recognizing the significance of Charcot-Marie-Tooth (CMT) disease, a rare neurological disorder that damages peripheral nerves and impairs sensory and motor function, as well as advocating for increased federal research funding.
• Cameron's Law, endorsed by the bipartisan Problem Solvers Caucus, to fully restore the Orphan Drug Tax Credit after it was cut in half by the 2017 tax law, a change that has made developing rare disease treatments even more challenging.
• Launched Bipartisan Congressional Sarcoidosis Caucus to increase awareness of Sarcoidosis, push for stronger federal investment in research, and collaborate with the FDA to update outdated processes that delay progress for patients urgently seeking effective treatment options.

Together, these bipartisan bills form a comprehensive rare disease package focused on accelerating research, strengthening clinical trials, restoring critical incentives for drug development, and ensuring patients have access to cutting-edge treatments. By boosting participation in trials, protecting research, recognizing overlooked diseases, and restoring the Orphan Drug Tax Credit, the package takes a full-spectrum approach to delivering hope to families and speeding up the progress toward life-saving cures.

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