We have received a most discouraging notification that the critical research being conducted by the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR, Grant 3U54AI117804), funded by National Institutes of Health will end if we do not take action today.

Critical Research Halted: Impact on Eosinophilic Gastrointestinal Disease (EGID) Patients

The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR), funded by the National Institutes of Health (NIH), has faced an abrupt halt in its critical research due to administrative decisions tied to new federal policies. For over 11 years, CEGIR has been at the forefront of advancing research into eosinophilic gastrointestinal diseases (EGIDs), working alongside patient advocates to improve diagnostics, treatment development, and patient care.

The sudden disqualification of CEGIR’s funding application threatens the progress made in understanding and treating EGIDs, which cause severe, lifelong illness. This decision impacts thousands of patients and families, halting clinical trials and essential research programs.

EOS Network urges Congress to act swiftly to protect this vital research and support the rare disease community.

Update 09.05.2025 - NIH Will Accept New Applications

What can be done to stop this from happening?

Since 2011, question 6 on NIH applications, asks if this project involves activities outside of the United States or partnerships with international collaborators.

If the answer is Yes, then applications must include a Foreign Justification attachment. This policy has not been followed at the NIH until the last few weeks.

As a result of this policy’s new enforcement, many grant applications are being dismissed. Nearly all of these grants are R-level grants which can be resubmitted every four months and these grantees have been told to re-submit their grant in July 2025.

The CEGIR grant is responding to a request for applications that only occurs every 5 years so it cannot be simply re-submitted. Even if a new pathway was set up for a new CEGIR application, this would likely take more than a year to implement. 

This means countless lives will be disrupted. People might die. This will gravely affect the lives of many Americans, who are currently in clinical trials being abruptly stopped, and by discontinuing live-saving research.

In view of these circumstances, please advocate for the NIH to do the following:

• NIH U54 grants, which have already been submitted and have not conformed to the Foreign Justification attachment, shall continue to be reviewed. The Foreign Justification can be provided as a post-review process.
• Call upon NIH to reinstate the review of grant application 3U54AI117804 and other Rare Disease Clinical Research Consortium grants that have been similarly affected.

Visit Congress.gov to find your representatives and make your voice heard. Every call and message counts in the fight to continue this essential research.

Given the urgent nature, phone calls may garner the fastest attention, but any communication is helpful.

Urge your Congressional members to ask the NIH to facilitate a fair scientific review of U54 renewal applications. A sample message is below:

Dear Senator/Representative,

I am a [fill in a little about yourself: e.g, patient, parent, friend of someone living with an eosinophilic disorder and where you live]. I was saddened to learn that federally funded research for my disease has been denied scientific review due to a minor administrative issue. I respectfully urge you to contact NIH Director Dr. Jay Bhattacharya and request reinstatement of proposal 3U54AI117804 for the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) before April 22.

For over a decade, CEGIR has advanced groundbreaking research, supported FDA approvals, and shaped clinical guidelines. Its long-term studies and training programs are essential to improving care and driving innovation for patients with eosinophilic gastrointestinal diseases.

Tens of thousands of Americans live with these life-altering conditions. Denying this grant renewal application a fair review threatens more than a decade of progress and risks delaying desperately needed treatments. Please act swiftly to help protect this vital work and the patients who depend on it.