DEEP Submits Formal Comments Opposing OMB Proposal That Threatens Progress in Rare Epilepsy Research
DEEP submitted formal comments to the Office of Management and Budget (OMB) in response to its proposed revisions to federal financial assistance rules (Docket OMB‑2026‑0034). These changes, if implemented, would significantly weaken independent scientific peer review, restrict essential disparities and community‑engaged research, limit international collaboration, and create new barriers for the high‑risk/high‑reward science that drives progress in rare epilepsies and the more than 10,000 rare diseases.
As a caregiver‑led collaborative representing more than 60 rare epilepsy and neurodevelopmental disorder organizations, DEEP submitted comments to ensure the concerns of families, researchers, clinicians, and industry partners are clearly heard. Our community depends on federal research programs that protect scientific integrity, encourage innovation, and support collaboration across institutions and borders. The proposed OMB rule threatens these foundations.
In our submission, we urged OMB to:
- Preserve independent scientific peer review — the gold standard of federal research
- Protect disparities research, community‑engaged science, and DEI activities essential to understanding rare disease impact
- Safeguard international collaboration critical for ultra‑rare disorders
- Maintain transparency and predictability in federal grantmaking
- Ensure agencies retain flexibility to support high‑risk/high‑reward science
DEE and rare epilepsy families cannot afford setbacks in scientific progress. DEEP will continue advocating to ensure federal policies strengthen — not undermine — the research pathways that lead to the first treatments for catastrophic childhood epilepsies.