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Get Support Issues Medicaid Newborn Screening FDA User Fees Rare Disease Innovation Hub Navigating the Access Environment Orphan Drug Incentives Driving Policy with Data See all Issues we advocate for. Our Issues Advocacy Why Advocate? How to Get Started Sign Up for Emails Take Action Trainings and Videos Youth Advocacy Find Your Legislators Congressional Caucus Advocate in Your State What&#039;s your Rare Disease Story? Share Programs RARE Young Adults RARE Artist RARE Pride RARE Diversity Community Congress RARE Access Program RARE Community Hub Community Scholarships RARE Community Grants RARE Advocate Training Series Connect with the rare disease community and explore ways to get involved. 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Latest Updates RECAP: 8th Annual Newborn Screening Bootcamp&nbsp; October 06, 2026 The Updated Substantial Evidence Guidance September 28, 2026 Bipartisan Bill Introduced to Fund State Implementation of Newborn Screening Conditions September 25, 2026 See All News Take Action Please Restore the Federal Newborn Screening System Call on Congress to renew their strong support for evidence-based, federal newborn screening and restore&nbsp;the program. 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