Resources

Rare Disease Day Social Media Toolkit

Use this social media toolkit with infographics, images and sample posts sharing key statistics and facts that illustrate the impact rare diseases have on over 25 million Americans. Share the toolkit with your colleagues and use it yourself on Rare Disease Day on Feb. 29, 2020.

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Improving Follow-Up After Newborn Hearing Screening

This action kit is designed to reduce loss to follow-up for newborns after their initial hearing screening. The kit offers solutions for engaging families and enrolling newborns in early intervention services. The ideas can help audiologists and EHDI offices improve outcomes for infants with hearing loss.

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Improving Systems: Changing Futures

In the Spread of Quality Improvement for Children and Youth with Special Healthcare Needs: An integrated Systems Strategy for Building the Title V Infrastructure project, NICHQ was tasked with improving the health and well being of children and youth with special healthcare needs and their families through building the capacity of state Title V programs to create and sustain effective community-based systems of care for this population. This report documents NICHQ's learnings and impact.

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