Michigan Rare Disease Day Event

Advocates Visit Michigan State House to Lobby for Rare Disease

LGDA Warrior Mom Sandra Goldfarb joined 75 other rare disease advocates at the Michigan State House in Lansing on February 28, 2017, to lobby for the establishment of a Rare Disease Advisory Council in Michigan.  This Council will give rare disease patients a voice in state government and provide educational resources to elected leaders when issues that would affect patients are introduced in the legislature.

This was Sandy’s first time to speak at an event like this and she tells us that while she was a bit nervous she was “honored to speak on behalf of all you amazing Warriors!”

Michigan Governor Rick Snyder provided an official proclamation that Michigan observed February 28, 2017, as Rare Disease Day, bringing awareness of the rare disease community to the state legislature.