The United States government's Office of Management and Budget (OMB) assist in the preparation of the federal budget, oversees its execution across executive agencies, and coordinates management, procurement, and regulatory policies.
OMB-2026-0034 is a proposed rulemaking that would fundamentally overhaul the administrative rules governing federal grants, cooperative agreements, and financial assistance.
An FOP clinician-scientist recently brought to the IFOPA’s attention proposed changes that, if implemented, could be extremely detrimental to FOP research as rare disorder research is heavily dependent on collaboration between scientists and the sharing of information and resources.
The IFOPA does not receive federal grant funding, but this proposal includes many changes that will affect research supported by the National Institutes of Health (NIH) and other government agencies. The NIH has funded FOP research for many years, and we hope it will be able to for many years to come.
Proposed changes that could impact rare disease research funding include:
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Section 200.205: Political appointees must approve every grant, and peer review becomes advisory.
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Section 200.340: Active grants can be terminated at any time, with no misconduct required and no appeal.
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Section 200.202: Research must align with White House priorities, not scientific need or congressional mandate.
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Section 200.220: International collaboration is prohibited
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Section 200.450: Public communications, including attending conferences and publishing papers, are restricted
There is an opportunity for public comment on OMB-2026-0034 through Monday, July 13.
Given the dramatic impact of this proposed rule on how grants, projects, and funding would be determined, it is very important for the rare disease community (not just scientists) to provide well-reasoned comments. These comments are vital as they become part of the official administrative record that courts examine when determining if an agency followed procedures and acted within its legal authority. Agencies also must respond to all substantive comments before a rule can be finalized.
Providing comments is your way to share your voice, even if you submit anonymously. Here are some tips to help with providing comments. You should not cut and paste these notes below into your statement. Please make them your own and briefly share how FOP has impacted your life. It's important to outline your concerns about each section.
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Share that you live with an ultra-rare disease, fibrodysplasia ossificans progressiva, for which there is only one approved treatment and there is much yet to be learned. FOP in one of more than 10,000 rare diseases and it's important to allow researchers to pursue their areas of interest and expertise (see Section 200.202)
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FOP research at academic medical centers is vital to improving care and developing treatments. There are FOP scientists all over the world and collaboration among scientists should not be limited (see Section 200.220)
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Peer-review of grants is critical because scientists and clinicians, not political appointees, have the most relevant knowledge to decide which grants should be funded (see Section 200.205)
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Participation in conferences like the IFOPA's FOP Drug Development Forum is critical for researchers to share what is and isn't working in their FOP research and creates opportunities for research collaboration (see Sectio 200.450)
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Once research is started it should be completed so we can answer important scientific questions and test new therapies (see section 200.340)
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Be sure to ask that the proposed changes be withdrawn
To submit your comment, go to the main rule page and click on "submit a public comment."
Make sure to select that you are submitting as "an individual" or anonymously.
Comments are due by July 13, 2026. Please consider putting in your comments today!
While this outlines how to raise your voice to the OMB, you are also invited to contact your Members of Congress and voice your concerns.
