RARE Hope Marks Bipartisan Introduction of the Genomic Answers for Children’s Health Act with Partner Organizations
Washington, D.C. — January 2026 — RARE Hope today welcomed the introduction of the bipartisan Genomic Answers for Children’s Health Act, legislation that would clarify Medicaid coverage for whole genome and whole exome sequencing for children with suspected rare or genetic conditions. The bill, introduced by Representatives Scott Peters (D-CA), Gus Bilirakis (R-FL), Marc Veasey (D-TX), Troy Balderson (R-OH), Kevin Mullin (D-CA), Mike Carey (R-OH), Chrissy Houlahan (D-PA), and Maria Elvira Salazar (R-FL), represents a significant step toward improving access to timely diagnosis and care for children nationwide.
The legislation builds on successful state-led initiatives — including Project Baby Bear in California and similar programs in Florida, Michigan, and Wisconsin — which have demonstrated that rapid genomic sequencing can accelerate diagnosis, inform clinical decision-making, improve outcomes, and reduce unnecessary healthcare costs. By clarifying coverage under Medicaid’s Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit, the Act seeks to ensure that access to genomic diagnostics does not depend on geography or insurance type.
The Genomic Answers for Children’s Health Alliance emerged in 2023 following informal discussions among a small group of leaders from patient advocacy, clinical genetics, and industry — including Jerry Conway, Nancy Mendelsohn, MD, John Fox, MD, and Simon Frost of RARE Hope — who shared a conviction that improving access to genomic diagnosis required coordinated action, not just dialogue. Following those discussions, the group moved quickly to execute, formally establishing the Alliance and engaging Leavitt Partners to lead its policy strategy and implementation. The Alliance has since grown into a broad coalition of children’s hospitals, laboratories, advocacy organizations, and research institutions working together to advance access to genomic sequencing for children.
“Genomic sequencing does more than shorten the diagnostic odyssey — it creates the foundation for understanding disease,” said Simon Frost, co-founder of RARE Hope. “RARE Hope was formed around the idea that rare disease mutations, when studied systematically, function as a Rosetta Stone for human biology. By identifying shared genetic and phenotypic patterns across related conditions, we can map dysfunction to function and pursue platform approaches to therapy development that extend well beyond any single diagnosis. Clarifying access under Medicaid is a necessary step toward making that approach possible at scale.”
More than 30 million Americans live with a rare disease, and over half are children. For many families, the path to diagnosis takes four to eight years, marked by repeated testing, misdiagnoses, and significant emotional and financial strain. Whole genome and whole exome sequencing can dramatically shorten this timeline — but their value extends further. When applied early and systematically, rare disease mutations provide a high-resolution map of human biology, linking specific genetic disruptions to observable dysfunction. Across patients and conditions, these data create a cumulative framework for understanding disease mechanisms, identifying shared pathways, and informing therapeutic targets that are relevant well beyond any single rare diagnosis.
RARE Hope looks forward to continued collaboration with policymakers, Alliance members, and partners to advance policies that improve outcomes for children with rare and undiagnosed conditions.
About RARE Hope
RARE Hope is a nonprofit organization dedicated to accelerating research, diagnosis, and therapeutic development for children with rare genetic and neurological conditions. By identifying shared genetic and phenotypic patterns across related diseases, RARE Hope works to translate rare disease insights into platform-based approaches that improve care and expand therapeutic possibilities.
For more information, visit www.rare-hope.org.
Media Contacts:
Simon Frost
Co-Founder
RARE Hope
202-680-8653
Nina Frost
Co-Founder
RARE Hope
202-680-8645