Give Kids With Rare Diseases a Chance

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Urge the Senate to Pass the Mikaela Naylon Give Kids a Chance Act

The Mikaela Naylon Give Kids a Chance Act would restore the Rare Pediatric Disease Priority Review Voucher (PRV) Program, a critical incentive that helps make it possible for companies to develop treatments for children with extremely rare conditions, including Epidermolysis Bullosa (EB). The program has been expired since December 2024.

Earlier this month, the U.S. House of Representatives passed this bill unanimously — a powerful show of bipartisan support. Now, the bill needs swift action in the U.S. Senate to reach the finish line.

For many rare pediatric diseases, including EB, the PRV program is one of the only tools that makes treatment development economically viable. Without it, groundbreaking science may never reach the children and families who need it most. No child should go without treatment simply because their disease is too rare.

Take Action in Two Simple Steps:

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Send the email below urging your Senators to support passage of the Mikaela Naylon Give Kids a Chance Act and restore the Rare Pediatric Disease PRV Program.

Your voice is crucial — help protect families affected by EB today!

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Urge the Senate to Pass the Mikaela Naylon Give Kids a Chance Act

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Subject: I Urge You to Stand With Families Living With Rare Disease

Message:

I am hoping that you will support passage of the Mikaela Naylon Give Kids a Chance Act. This is a very important piece of legislation for the 10% of the population, of which I am one, who lives with a rare disease. We as a rare disease community were excited to see that the Mikaela Naylon Give Kids a Chance Act passed the House unanimously earlier this month. The possibility that this bill could get across the finish line is a bright spot in this challenging year. The Rare Pediatric Disease PRV Program has been expired since December 2024, and it is affecting the ability of small companies to get promising therapies into trials, especially for very rare diseases. The ability to be awarded a PRV after approval of a rare pediatric drug is one of the only ways therapy development for very small populations becomes economically viable, and no child should go without treatment because their disease is too rare. Without the PRV as an option, promising science will never reach our communities. I think the tradeoff of a company getting priority review for a drug that wouldn't otherwise qualify for priority review is worth it if it means our kids can have the promise of a life without disease. I truly hope that I can count on your vote to approve this piece of legislation. My understanding is that using a ‘hotline’ mechanism requires unanimous consent so I, along with all of us in the rare disease community, are counting on you.

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