Washington, DC – Rare Disease Company Coalition (RDCC) Executive Director Stacey Frisk released the following statement on the continuing resolution to fund the federal government, which includes a five-year extension of the life-changing rare pediatric disease priority review voucher (PRV) program.
The RDCC strongly urges Congress to advance the continuing resolution to support key programs like the rare pediatric disease priority review voucher (PRV).
The rare pediatric disease PRV program has already spurred extraordinary progress for pediatric rare disease treatments and supported groundbreaking innovation for patients. The RDCC’s latest research found that over the past decade, the program has led to new innovations that benefit over 200,000 rare disease patients and addressed unmet medical needs across 47 rare pediatric indications. Over 90 percent of all rare pediatric disease PRVs were awarded to therapies for indications with no approved therapy on the market.
Now, thanks to our champions on Capitol Hill, Congress has the opportunity to ensure innovative companies like our members can continue to discover, develop, and deliver treatments for children, while reinvesting critical dollars into additional R&D for rare disease treatments. Through the continuing resolution, Congress can bring stability to innovators, encourage further investment and create the conditions for groundbreaking innovations in rare pediatric disease drug development.
Read our letter to Congress here.