About CVS Speaks
We are a social media advocacy group for Cyclic Vomiting Syndrome (CVS) with over 18,000 followers on Facebook and Instagram. Not only do we promote for Rare Disease Day, we actually begin our campaign to raise CVS awareness on RDD, as ours is on March 5th. Our admin, Keetha attended “Rare Disease Day on Capital Hill” a few years ago, and we are a member of Rare Disease Legislative Advocates. Our tag line is “Rare as a Diamond, and just as tough”.