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Policy Steering Committee

The National Organization for Rare Disorders (NORD®) Policy Steering Committee (PSC) is composed of eight Rare Action Network Ambassador volunteers. The Rare Action Network is powered by NORD and its volunteers to connect and empower a unified network of rare disease advocates at the state and federal levels to advance rare disease policy.

The PSC will work directly with NORD’s Policy team to collaborate on state and federal policy issues impacting the rare disease community to ensure that NORD continues to effectively represent the community we serve. The PSC meets virtually once per month with the Policy team to provide input on policy issues and positions, advocacy opportunities, written materials and more. To engage with the PSC, sign up to be a member of the Rare Action Network.

Krista Gilbert
New Hampshire Ambassador
Mike Hu
California Ambassador
Tammy Jones
Arkansas Ambassador
Nick Kirchhof
Colorado Ambassador
Tamra Misak
Oklahoma Ambassador
Kim McClellan
Arkansas Ambassador
Julie Raskin
New Jersey Ambassador
Deborah Skolaski
Texas Ambassador
Patricia Sullivan
North Carolina Ambassador
Danyelle Sun
Wisconsin Ambassador