{"id":10181,"date":"2024-09-10T15:20:56","date_gmt":"2024-09-10T20:20:56","guid":{"rendered":"https:\/\/ibio.org\/?p=10181"},"modified":"2024-09-10T21:14:13","modified_gmt":"2024-09-11T02:14:13","slug":"ibio-joins-urgent-call-for-rare-pediatric-disease-program-reauthorization","status":"publish","type":"post","link":"https:\/\/ibio.org\/ibio-joins-urgent-call-for-rare-pediatric-disease-program-reauthorization\/","title":{"rendered":"iBIO Joins Urgent Call for Rare Pediatric Disease Program Reauthorization"},"content":{"rendered":"

iBIO has joined forces with fellow members of the Council of State Bioscience Associations (CSBA) in a crucial initiative to safeguard the future of rare pediatric disease research and treatment. Yesterday, our coalition sent a letter<\/a> to congressional leaders, urging the reauthorization of the Rare Pediatric Disease Priority Review Voucher (RPD PRV) program before its impending expiration at the end of September.<\/p>\n

 <\/p>\n

Why It Matters<\/h2>\n

Rare diseases affect a significant portion of the population, with children comprising nearly half of those impacted. While treatments exist, options remain limited due to the high costs of development and the relatively small patient populations. The RPD PRV program has been a vital incentive in driving innovation in this critical area.<\/p>\n

John Conrad, President and CEO of iBIO, emphasized the importance of this program: “The RPD PRV program has been a crucial driver of innovation in treatments for rare pediatric diseases. Its reauthorization is vital to ensure that we continue to make progress in developing therapies for some of our most vulnerable patients. We urge Congress to act swiftly to renew this program and maintain the momentum in rare disease research and development.”<\/p>\n

How the Program Works<\/h2>\n

The RPD PRV program offers a powerful incentive for drug developers. When a company receives approval for a drug or biological product treating a rare pediatric disease, they may qualify for a voucher. This voucher can be redeemed to receive priority review for a different product, potentially accelerating its path to market. Additionally, these vouchers can be sold to other drug makers, generating funds to support further research and development.<\/p>\n

 <\/p>\n

Proven Success<\/h2>\n

Since its inception, the RPD PRV program has demonstrated remarkable success:<\/p>\n

    \n
  • 53 vouchers have been awarded for 39 rare pediatric diseases<\/li>\n
  • 36 of these diseases had no previous treatment options<\/li>\n
  • Over 200,000 patients have benefited from the resulting innovations<\/li>\n<\/ul>\n

     <\/p>\n

    Broad Support and Urgent Action Needed<\/h2>\n

    The program has enjoyed bipartisan support, having been reauthorized twice since its creation in 2012. However, with the current authorization set to expire on September 30, 2024, swift action is crucial.<\/p>\n

    iBIO and our CSBA partners are calling on Congress to pass the bipartisan, bicameral Creating Hope Reauthorization Act before the deadline. Failure to reauthorize this program could have devastating consequences for some of our most vulnerable patients suffering from diseases that currently have no cures or treatments.<\/p>\n

     <\/p>\n

    Join Our Efforts<\/h2>\n

    As members of the bioscience community, we understand the critical importance of this program in driving innovation and bringing hope to patients and families affected by rare pediatric diseases. We encourage all iBIO members to reach out to their congressional representatives and voice their support for the timely reauthorization of the RPD PRV program.<\/p>\n

    Together, we can ensure that this vital pathway for developing life-changing therapies remains open, continuing to benefit patients and drive progress in the treatment of rare pediatric diseases.<\/p>\n","protected":false},"excerpt":{"rendered":"

    iBIO has joined forces with fellow members of the Council of State Bioscience Associations (CSBA) in a crucial initiative to safeguard the future of rare pediatric disease research and treatment. Yesterday, our coalition sent a letter to congressional leaders, urging the reauthorization of the Rare Pediatric Disease Priority Review Voucher (RPD PRV) program before its […]<\/p>\n","protected":false},"author":12,"featured_media":10183,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[143,146],"tags":[],"class_list":["post-10181","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ibio-news","category-policy-news"],"_links":{"self":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/posts\/10181","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/users\/12"}],"replies":[{"embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/comments?post=10181"}],"version-history":[{"count":5,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/posts\/10181\/revisions"}],"predecessor-version":[{"id":10187,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/posts\/10181\/revisions\/10187"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/media\/10183"}],"wp:attachment":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/media?parent=10181"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/categories?post=10181"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/tags?post=10181"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}