--- title: Rare Disease PRV Reauthorization - Patients Rising description: Rare disease PRV reauthorization is crucial for new treatments for children. Congress must act now to secure hope for vulnerable patients. image: https://www.patientsrising.org/hubfs/shutterstock_1700044192.jpg --- [![Patients Rising](https://www.patientsrising.org/hs-fs/hubfs/raw_assets/public/PatientsRising-u4m/templates/images/patients_rising_logo.png?width=120&height=900&name=patients_rising_logo.png "Patients Rising")](https://www.patientsrising.org/) - Policy Center - - [Policy Framework ](https://www.patientsrising.org/policy) - [Affordability ](https://www.patientsrising.org/policy/affordability) - [Accountability ](https://www.patientsrising.org/policy/accountability) - [Innovation ](https://www.patientsrising.org/policy/innovation) - [Federal Healthcare Policy ](https://www.patientsrising.org/policy/federal) - [Learning Center ](https://www.patientlearningcenter.org/) - - [LEAD Education ](https://www.patientlearningcenter.org/lead) - [Our Community ](https://www.patientsrising.org/our-community) - [Patient Senate ](https://www.patientsrising.org/patient-senate) - Insights - - [All Posts ](https://www.patientsrising.org/advocacy-updates) - [PR Magazine ](https://www.patientsrising.org/pr-magazine) - [Patient Stories ](https://www.patientsrising.org/advocacy-updates/tag/patient-stories) - [Medical Bankruptcy in America ](https://www.patientsrising.org/medical-bankruptcy-america) - [State of the Patient Podcast ](https://www.patientsrising.org/state-of-the-patient-podcast) - Get Involved - - [Share Your Story ](https://www.patientsrising.org/storyshare) - [Become an Advocate ](https://www.patientsrising.org/become-an-advocate) - [Join the Patient Senate ](https://www.patientsrising.org/patient-senate) - [Join Our Community ](https://www.patientsrising.org/community) - [Events ](https://www.patientsrising.org/events) - - [State of the Patient Summit & Rise Awards ](https://www.patientsrising.org/events/summit-and-rise-awards) - [Advocacy Fly-ins ](https://www.patientsrising.org/patients-rising-fly-in) - [Virtual Lunch n' Learns ](https://www.patientsrising.org/events) - Virtual Town Halls - About Us - - [Our Mission ](https://www.patientsrising.org/about-patients-rising) - [Our Principles ](https://www.patientsrising.org/patients-rising-principles) - [Our Team ](https://www.patientsrising.org/team) - [Our Board of Directors ](https://www.patientsrising.org/board) - [Our Advisory Councils ](https://www.patientsrising.org/advisory-council) - [Partners and Coalitions ](https://www.patientsrising.org/partners) - Corporate Partnerships - [Funding & Financial Reports ](https://www.patientsrising.org/financial-transparency) [Donate ](https://patientsrising.org/?form=support-patientsrising) This is a search field with an auto-suggest feature attached. - There are no suggestions because the search field is empty. [Rare Disease](https://www.patientsrising.org/advocacy-updates/tag/rare-disease) Sep 17, 2024 Rare Disease PRV Reauthorization Written by [Admin](https://www.patientsrising.org/advocacy-updates/author/admin) SHARE Link copied!   ## **Supporting a Bright Future for Children with Rare Diseases: Why Congress Must Reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program** At Patients Rising, we believe every child deserves the chance to pursue their dreams, no matter the challenges they face. The [Rare Pediatric Disease PRV program](https://www.fda.gov/industry/medical-products-rare-diseases-and-conditions/rare-pediatric-disease-designation-and-priority-review-voucher-programs) provides a crucial lifeline for children with rare diseases. This program offers essential incentives that push drug developers to focus on often-overlooked rare conditions. To keep the program active, Congress must reauthorize it through the [Creating Hope Reauthorization Act of 2024.](https://barragan.house.gov/2024/02/16/reps-barragan-mccaul-eshoo-bilirakis-trahan-and-burgess-introduce-creating-hope-reauthorization-act-of-2024/) By passing this Act, Congress will drive continued scientific progress and the development of new treatments for rare pediatric diseases. Immediate action is necessary to ensure this program keeps delivering hope to these children. ### **The Critical Need for Treatment Options in Rare Disease Pediatric Diseases** In America, about 30 million people live with one of over 10,000 rare diseases. Shockingly**,** only 5 percent of these conditions have FDA-approved treatments. For children with rare diseases, the outlook is even worse: half of them won’t live to see their fifth birthday. As a result**,** these statistics highlight the urgent need for programs like the PRV. It offers financial incentives that encourage drug developers to take on the challenge of treating rare conditions. Without it, many of these diseases would remain untreatable, leaving patients without hope. ### **Driving Rare Disease Innovation Through Financial Incentives** The PRV program has already improved the lives of hundreds of thousands of patients. In fact**,** it has supported the development of treatments for over 200,000 people across 47 rare disease conditions. More than 90 percent of the vouchers have gone to diseases that previously had no approved therapies. Furthermore**,** the program’s success continues to grow. In the last four years alone**,** more than half of all vouchers have been granted. However, if Congress fails to act, the PRV program may end, and the progress made could be lost. ### **Congress Must Act on Rare Disease PRV Reauthorization** If Congress does not move quickly, the PRV program will face an uncertain future. This could destabilize rare disease drug development and negatively affect millions of children and families waiting for new treatments. At Patients Rising, along with countless advocates, caregivers, and patients across the country, we urge Congress to act. By passing the **Creating Hope Reauthorization Act,** lawmakers can secure the future of the PRV program and ensure that children with rare diseases have a continued chance at a brighter and healthier future. The time for action is now. [Read our full letter HERE ](https://www.patientsrising.org/wp-content/uploads/2024/09/EC-PRV-Sept.pdf) **Join the conversation:** Are you or a loved one living with a rare disease and waiting for a treatment? [Share your story with Patients Rising](https://patientsrisingstories.org/get-involved/your-patient-story/) and join us in advocating for the change that can bring new treatments and hope to those who need it most. Together, we can make a difference!   Tags: [Rare Disease](https://www.patientsrising.org/advocacy-updates/tag/rare-disease) ## Related Posts [View All News ](https://www.patientsrising.org/advocacy-updates) [News](https://www.patientsrising.org/advocacy-updates/tag/news) Apr 29, 2025 [Unlocking Hope: New White Paper Calls for Faster Access to Rare Disease Treatments](https://www.patientsrising.org/advocacy-updates/white-paper-rare-disease-treatments-innovation) [Read More ](https://www.patientsrising.org/advocacy-updates/white-paper-rare-disease-treatments-innovation) [Rare Disease](https://www.patientsrising.org/advocacy-updates/tag/rare-disease) Sep 24, 2024 [Protect Rare Disease Treatments and Medication Affordability](https://www.patientsrising.org/advocacy-updates/protect-rare-disease-treatments) [Read More ](https://www.patientsrising.org/advocacy-updates/protect-rare-disease-treatments) [Rare Disease](https://www.patientsrising.org/advocacy-updates/tag/rare-disease) Jun 20, 2024 [Patients Rising Signs onto LEAD Coalition Letter in Support of Drugs Such As Donanemab](https://www.patientsrising.org/advocacy-updates/patients-rising-signs-onto-lead-coalition-letter-in-support-of-drugs-such-as-donanemab) [Read More ](https://www.patientsrising.org/advocacy-updates/patients-rising-signs-onto-lead-coalition-letter-in-support-of-drugs-such-as-donanemab) ## Get Updates In Your Inbox Sign up for updates about our patient education, support and advocacy programs and initiatives. 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