Current Actions

Tell your Elected Officials to Support the Access to Genetic Counselor Services Act (H.R. 6280)

Thu, 04 Dec 2025 05:00:00 GMT

Approximately one in ten Americans is affected by a rare disease, and around 80% of these are genetic in etiology. Genetic counselors play an important role in providing high quality, accessible genetic services to rare patients and their families, but Medicare beneficiaries face significant barriers to access because the Centers for Medicare and Medicaid Services (CMS) do not currently recognize genetic counselors as healthcare providers. This prevents genetic counselors from being reimbursed for services provided to Medicare beneficiaries, obstructing access and making it more difficult to obtain care. The Access to Genetic Counselor Services Act (H.R. 6280) would address this issue by recognizing genetic counselors as Medicare providers, reducing delays and expanding access to high-quality genetic counseling services. Contact your members of Congress and urge them to support this important legislation!

Tell Policymakers to Support our Federal Newborn Screening System

Wed, 23 Apr 2025 04:00:00 GMT

Earlier this year, the Administration eliminated the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), and many federal newborn screening activities may be impacted by other changes at the Department of Health and Human Services (HHS). The ACHDNC is a critical element of the U.S. newborn screening system, playing a central role in the process of adding conditions to the federal Recommended Uniform Screening Panel (RUSP), federal guidelines outlining what serious rare conditions states should screen for as part of their universal newborn screening programs. Urge policymakers to support legislation restoring federal leadership in newborn screening!

Support the Rare Pediatric Disease Priority Review Voucher (PRV) Program

Mon, 07 Apr 2025 04:00:00 GMT

Members of Congress can help drive new treatments for children with rare diseases — but they need to act soon.

Since 2012, the FDA’s Rare Pediatric Disease Priority Review Voucher (PRV) Program has helped spur innovation by rewarding companies that develop life-saving therapies for children with rare diseases. According to NORD’s White Paper, this program has helped generate 63 new and innovative treatment options for children living with one of 47 different conditions— real progress for kids living with rare diseases.

The Give Kids a Chance Act (H.R. 1262 / S. 932) would extend this program for at least five more years. The House of Representatives successfully passed H.R. 1262 on December 1, but there is more work to be done to advance this critical legislation through the Senate and across the finish line. Congress must act quickly to preserve this vital incentive and continue driving breakthroughs for children with rare diseases!

Join the Rare Action Network

Wed, 03 Dec 2025 05:00:00 GMT

Members of the Rare Action Network are part of 30+ million person community working towards improving the lives of patients with rare diseases. RAN members will positively improve the quality of life for rare disease patients and their families by ensuring rare diseases become a national priority through policy, education and awareness. JOIN TODAY!