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Jan. 26, 2021


Kenny Brooks, West Virginia Rare Action Network Volunteer Ambassado

Posted by Sean Roberts

Rare Disease Advisory Councils

I have been advocating for Rare Disease Advisory Council legislation in West Virginia since 2016. In 2020, we finally completed the process. The RDAC effort took the collective work of advocates, organizations and legislators. I am very excited to report that the West Virginia RDAC was passed unanimously in both legislative chambers – there was not one single ‘NAY’ vote. The RDAC was signed by the Governor and officially became law in July.