Critical NIH-Funded Research on Eosinophilic Gastrointestinal Diseases Abruptly Halted

FOR IMMEDIATE RELEASE

Media Contact:
media@apfed.org, 713-493-7749

Critical NIH-Funded Research on Eosinophilic Gastrointestinal Diseases Abruptly Halted
National Patient Advocacy Organization Urges Action to Protect Patients

Atlanta, GA – April 20, 2025— The unforeseen loss of an opportunity to renew an NIH grant to support the research of eosinophilic gastrointestinal disease (EGID) has left tens of thousands of patients and their loved ones with dashed hope.

For over a decade, the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) advanced the diagnosis and treatment of EGIDs through a vital NIH-supported research network. This sudden funding halt threatens to derail clinical trials, disrupt critical research, and harm the very patients CEGIR was created to help.

CEGIR (Grant 3U54AI117804), part of the NIH’s Rare Diseases Clinical Research Network, united top scientists, clinicians, and patient advocates to study these chronic, often debilitating diseases. Since 2014, the American Partnership for Eosinophilic Disorders (APFED) has also supported CEGIR with additional funding from the patient community.

“The consequences of this decision will fall hardest on patients and their families,” said Mary Jo Strobel, Executive Director of APFED. “These families already shoulder the burden of diseases that are under-recognized and under-treated.”

CEGIR’s application was not denied due to scientific merit. Rather, it was withdrawn over a technical issue related to NIH’s foreign component policy. Though their collaboration includes experts in two countries, all work is conducted at U.S. institutions with no funding sent abroad. In previous successful funding cycles, they had indicated “yes” to the foreign component question and submitted a required form later upon request.

CEGIR submitted their renewal application in August 2024 and had a scientific review scheduled. In April 2025, just weeks before the review date, they were notified of withdrawal. They are not permitted to revise the application or submit the form retroactively.

“This setback is deeply saddening,” said Ryan Piansky, a graduate student and patient advocate, who lives with an eosinophilic gastrointestinal disease and advocated for years to have federal funding directed to EGID research. “Our patient community has worked hard to be ‘seen’ in the research arena. For decades, we’ve raised awareness, educated, advocated for funding and raised money ourselves to help fuel progress.  To see this research paused now, without cause or recourse, is devastating.”

Most EGID subtypes still lack FDA-approved therapies. CEGIR’s research has informed treatment guidelines, supported drug development, and offered hope to families. Their work contributed to the first FDA-approved treatment for eosinophilic esophagitis (EoE) in 2022.

The impact extends beyond care. CEGIR’s long-term studies revealed insights into disease progression and their training programs helped foster the next generation of EGID experts. Without continued support, years of progress are at risk.

APFED is urging Congress and federal agencies to act swiftly to protect this essential research by reinstating the U54 renewal applications such as CEGIR’s so that they may undergo a fair and full scientific review.

“Congress has long recognized the importance of eosinophilic diseases,” Strobel added. “We ask that commitment continue so that progress in rare disease research isn’t delayed.”

APFED remains steadfast in its mission and will continue to advocate for CEGIR’s work and support scientific advancement through its HOPE on the Horizon program.

For more information or to join APFED’s efforts, visit www.apfed.org.

***

About APFED
The American Partnership for Eosinophilic Disorders (APFED) is a 501(c)(3) nonprofit organization dedicated to improving the lives of those affected by eosinophil-associated diseases through education, research, advocacy, and support.