West Virginia

Kenny Brooks
West Virginia State Ambassador
[email protected]

Please join the West Virginia Rare Action Network for our bi-monthly virtual rare discussion groups. Join rare advocates to discuss challenges rare patients are facing in West Virginia and connect with others. Below are the dates and registration links for the meetings.

Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for West Virginia’s Rare Action Network to attend your event? Contact the NORD Rare Action team today and learn more. Please check back regularly for news of upcoming events and activities in West Virginia.

In order to make meaningful change in the lives of rare disease patients and their families in the state of West Virginia, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.

In this fifth edition of NORD’s “State of the States Report,” we analyze all 50 states and Washington, D.C., on eight issues that impact the rare disease community. Each state has their own individual report card (as seen below), but for more background and an explanation of the grading methodology, please download the full report.