Foundation Fighting Blindness Urges Withdrawal of Federal Funding Rule to Protect IRD Research

Foundation Fighting Blindness Urges Withdrawal of Federal Funding Rule to Protect IRD Research

For individuals and families navigating the challenges of inherited retinal diseases (IRDs), the journey toward treatments and cures is often fueled by hope in scientific progress. That progress, however, relies heavily on a stable and predictable research environment. This is why a recent call from the Foundation Fighting Blindness (FFB) for the withdrawal of a new federal funding rule is of critical importance to our community. The proposed rule, if implemented, could significantly impact the pace and direction of vital research into blinding diseases.

According to VisionMonday.com, the Foundation Fighting Blindness is urging the Office of Management and Budget (OMB) to withdraw its proposed rule (docket OMB-2026-0034) titled “Regulation for Federal Financial Assistance.” This rule, published on May 29, 2026, proposes a major rewrite of 2 CFR Part 200, which governs U.S. federal grants and cooperative agreements, with a targeted effective date of October 1, 2026.

The FFB states that the proposed rule would “fundamentally alter the long-standing framework governing federal financial assistance in ways that would undermine the biomedical research enterprise, create substantial uncertainty for research institutions and patient organizations, and jeopardize the public-private partnerships that have driven decades of medical innovation.” The foundation has been a driving force in the development of treatments for blinding diseases for over 50 years, contributing to scientific discoveries that led to the first FDA-approved gene therapy for an inherited disease.

Key changes outlined by the FFB that would be implemented by the proposed rule include:
* Undermining Merit-Based Scientific Review: The rule could authorize additional political review of awards that have already undergone rigorous scientific evaluation, and allow for changes to agency priorities even after the peer-review process is complete.
* Ad-Hoc Termination of Awards: Agencies might be permitted to terminate discretionary awards based on agency priorities or national interest, rather than solely on scientific performance or recipient compliance.

For patients living with IRDs and dry age-related macular degeneration (AMD), many of whom face irreversible vision loss and have no approved treatments, the predictability of the federal research system directly influences whether promising therapies reach them. The proposed revisions, which received tens of thousands of comments during the public comment period that ended on July 13, 2026, could disrupt ongoing clinical research and impact universities, non-profits, patient advocacy organizations, and research institutions.

The Foundation Fighting Blindness emphasizes that patients with IRDs and dry AMD rely on a stable, predictable, and scientifically driven federal research enterprise. They are requesting that the OMB withdraw the proposed rule. If reforms are deemed necessary, the FFB suggests engaging stakeholders through a new rulemaking process that preserves merit-based scientific review, respects congressional intent, and strengthens the research ecosystem essential for delivering new therapies to patients.

This advocacy highlights the ongoing commitment to ensuring that the path to new treatments and cures for inherited retinal diseases remains clear and unhindered by policies that could inadvertently slow progress.