Rare Disease News

NORD Extends Exclusive CME Partnership with Medlive

Published January 6, 2026 by NORD

Partnership focuses on delivering high-quality medical education to improve rare disease patient outcomes BOSTON AND WASHINGTON, D.C., January 6, 2026 – Medlive and the National Organization for Rare Disorders® are…

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Statement from Pamela Gavin, CEO, National Organization for Rare Disorders (NORD) on the Senate Failure to Approve the Give Kids a Chance Act By Year-End

Published December 18, 2025 by NORD

The Senate’s failure to advance the Give Kids a Chance Act through unanimous consent is deeply disappointing.  For more than a year, thousands of rare disease advocates have engaged lawmakers…

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