We support equitable and early access to lifesaving genetic testing and diagnostics–including advancing the continued success and modernization of our nation’s newborn screening system–to enable earlier treatment and better health outcomes for those living with a rare disease. We will continue to advocate for newborn screening re-authorization and modernization and promote policies that encourage access to and coverage of genetic testing.

In the News

RDCC Delivers New Set of Policy Recommendations to Promote More Streamlined and Effective Early Diagnosis of Rare Diseases
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RDCC Joins in Support of “Newborn Screening Saves Lives Reauthorization Act of 2021” in Letter to Senate Leaders
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Rightsizing the U.S. Newborn Screening System
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Recent Updates

RDCC Offers Endorsement of the Bipartisan BENEFIT Act in Support of Patient Engagement in Drug Development
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The Unique Clinical and Economic Challenges of Rare Disease Diagnosis
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Project GUARDIAN: Pioneering Genomic Newborn Screening for Rare Genetic Diseases
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Featured Policy Positions

Newborn Screening

Newborn screening is a vital and proven public health program that screens approximately four million U.S. newborns each year. In the first 24 to 48 hours of a baby’s life, a small blood sample is taken to detect serious, potentially fatal, genetic conditions that can be treated if diagnosed early. We believe equitable access to newborn screening can ensure that all babies have the best chance for a healthy life.

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Access to and coverage of genetic testing

As technology and innovation in rare disease research and development continues to advance, genetic testing will play an increasingly important role in the diagnosis and potential treatment of inherited and rare conditions. We believe equitable and early access to lifesaving genetic testing and diagnostics will enable earlier treatment and better health outcomes for all rare disease patients.

Patient-focused drug development

Incorporating advance patient engagement into the diagnosis and treatment development process will help advance the development and delivery of treatments to those living with rare diseases. We applaud the work Congress has done to date to advance patient engagement in drug development, and call on Congress to now pass the BENEFIT Act which would allow the FDA to capture meaningful patient experiences, PFDD, and related data points as part of their benefit-risk assessment tool.

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What They Said

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The Rare Disease Company Coalition helps educate key policy stakeholders on the unique considerations of life science companies when developing and bringing to market therapies for small and differentiated patient populations. If you are a life science company dedicated to rare diseases and interested in joining us, please contact info@rarecoalition.com.

If you are a member of the media interested in learning more about the Rare Disease Company Coalition, please contact us at media@rarecoalition.com.

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