Without urgent Congressional action, hope for millions of children may vanish for good.
Washington, D.C. — Leaders from 19 biotechnology companies are urging Congress to support the swift reauthorization of the rare pediatric disease priority review voucher (PRV) program.
Immediate restoration of the rare pediatric disease PRV program is critical to achieving our important mission to address the unmet medical needs of the rare disease community. Programs like the rare pediatric disease PRV are crucial to mitigating the risks associated with investment in the rare disease space; without it, investors may view rare disease drug development as too risky – and that could make the difference between bringing a product to market and shuttering a program.
Children with rare, often fatal, and progressively debilitating diseases rely on this program in the hope of finding a treatment for their conditions. Every minute the PRV program remains expired further jeopardizes these children’s health and livelihood.
We cannot allow hope for these children to vanish for good. As leaders in the rare disease community, we urge policymakers to prioritize the reauthorization of this critical program as swiftly as possible.
Read the full letter below.