SSH Supports RARE Act 2018

 In News

Sofia Sees Hope has joined with dozens of other organizations representing the 30 million men, women, and children living in the United States with rare disease, to support the Rare Disease Advancement, Research, and Education Act of 2018 (H.R.5115) or the “RARE Act of 2018.”

The RARE Act would provide much-needed investment in rare disease research; direct the Centers for
Disease Control and Prevention (CDC) to increase its efforts in tracking and quantifying rare diseases;
require the Agency for Healthcare Research and Quality (AHRQ) to implement rare disease outreach
and awareness campaigns for physicians; and commission additional analysis and recommendations
from the National Academy of Sciences on how to accelerate rare disease therapeutic development.

Read the full letter here.

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