APFED Opposes Proposed Federal Research Funding Rule; Urges Community Action

The American Partnership for Eosinophilic Disorders (APFED) has submitted formal comments opposing a proposed federal rule that would significantly change how federally funded research is awarded, managed, and overseen.

⚠️ Advocacy Alert: Take Action by July 13, 2026

APFED encourages patients, caregivers, family members, researchers, and healthcare professionals to submit comments on the proposed rule.

• Submit a comment
• Read the full proposal

The Office of Management and Budget (OMB) is accepting public comments on the proposed rule through July 13, 2026.

We strongly encourage members of our community to  submit a comment.

Even a brief personal statement can help demonstrate the importance of continued investment in rare disease research. Personal stories from patients, caregivers, family members, researchers, and healthcare professionals help policymakers understand the real-world impact of research funding decisions.

For people living with eosinophilic diseases, research is critical to better diagnostics, treatments, and improved quality of life. Because many eosinophilic diseases are rare, progress often depends on sustained federal investment, independent scientific review, and collaboration among researchers across institutions and countries.

APFED is concerned that the proposed rule would fundamentally change how federally funded research decisions are made by allowing political appointees greater authority over the awarding, continuation, modification, and termination of research grants. The proposal would diminish the longstanding role of independent scientific review in determining which research projects receive and retain funding. APFED believes decisions about research funding should continue to be guided primarily by scientific expertise and evidence rather than political considerations.

The proposed rule raises particular concerns for rare diseases. Because rare disease research often requires years of study, participation from patients and families, and collaboration across multiple research centers, uncertainty about whether projects could be altered, redirected, or discontinued outside of the traditional scientific review process, and may discourage long-term research efforts and delay progress for patients with significant unmet medical needs.

APFED strongly supports a research system that prioritizes scientific merit, independent peer review, transparency, and long-term commitments to advancing patient outcomes. We have urged the Office of Management and Budget to withdraw the proposed rule and preserve the framework that has helped drive meaningful progress for rare disease patients.

✏️ What Should You Include in Your Comment?

Your comment does not need to be long or technical. The most effective comments are personal and explain why medical research matters to you and your family. You may wish to discuss:

• How eosinophilic disease has affected your life or your child’s life.
• The role that medical research has played in improving diagnosis, treatment, or quality of life.
• Whether you or a family member has participated in a research study, clinical trial, patient registry, or natural history study.
• Why independent scientific review and long-term research funding are important to patients living with rare diseases.
• Why international collaboration may be necessary for rare disease research, where patient populations are often small.
• How delays, interruptions, or uncertainty in research funding could affect patients waiting for new treatments and scientific advances.

You do not need to address every issue in the proposed rule. A brief comment explaining why continued support for rare disease research matters to you can be impactful.

Sample Comment

“I am the parent of a child living with eosinophilic disease. Research has helped us better understand this disease and has contributed to treatment options that were not available when my child was first diagnosed.

I am concerned that the proposed Regulation for Federal Financial Assistance would weaken the role of independent scientific peer review in decisions about which research projects receive funding and whether those projects continue. Patients with rare diseases depend on a research system that evaluates projects based on scientific merit, expertise, and potential patient benefit.

Rare disease research often requires years of work and collaboration among researchers, clinicians, and patients. I urge OMB to preserve a research system in which funding decisions are guided by independent scientific review and long-term commitments to advancing patient outcomes.”

Additional Advocacy Opportunities

In addition to submitting a public comment, you can:

• Share this alert with family, friends, healthcare providers, researchers, and advocacy organizations.
• Encourage professional societies, medical institutions, and patient organizations to submit comments.
• Contact your U.S. Senators and Representative and ask them to oppose this proposed rule (Docket OMB-2026-0034). Find your elected officials:

Senate: www.senate.gov/senators/senators-contact.htm

House: www.house.gov/representatives/find-your-representative

FAQs

Q: Does APFED support medical research?

A: Yes. APFED strongly supports scientifically rigorous research that advances understanding, diagnosis, treatment, and quality of life for people living with eosinophilic diseases. Our concern is that the proposed rule could create barriers that slow or disrupt that progress.

Q: Why is APFED speaking out?
A: APFED is concerned that the rule would reduce the role of independent scientific peer review in funding decisions and give political appointees greater authority over which research projects receive funding and whether funded projects continue. We believe research decisions should be guided by scientific merit, expert review, and patient needs.

Q: Will this affect eosinophilic disease research?
A: Potentially. Rare disease research often depends on federal funding, long-term studies, and collaboration across institutions. APFED believes several provisions of the proposal could create significant challenges for those efforts, particularly if research funding decisions become less dependent on scientific peer review and more vulnerable to non-scientific considerations.

Q: Why are rare diseases especially vulnerable?
A: Rare diseases often receive less private investment and depend more heavily on federal research funding. Because patient populations are small, researchers frequently collaborate across institutions and countries to conduct meaningful studies.

Q: What is APFED asking for?
A: APFED has urged OMB to withdraw the proposed rule and preserve a research system built on scientific merit, independent peer review, and long-term research commitments.

Q: Is APFED opposed to government oversight of research grants?

A: No. APFED supports accountability, transparency, and responsible stewardship of taxpayer dollars. Our concern is that the proposed rule would reduce the influence of independent scientific peer review and allow research funding decisions to be influenced by factors other than scientific merit and patient benefit.

Q: Is APFED taking a position on politics or research priorities?

A: No. APFED is not advocating for any particular research outcome or political viewpoint. Our concern is that research funding decisions should continue to be guided primarily by scientific merit, independent expert review, and patient need. We believe those principles are especially important for rare disease communities that rely on sustained, long-term research efforts.