A Gift of Hope

by SWAN USA February 29, 2016 4 comments Today on Rare Disease Day, Gene Dx announced their donation of free exome tests to SWAN USA. To view the press release go to PRNewswire. "We are so thankful for the opportunity to be able to give a handful of families a chance at finding answers, some families aren't able to get this test because […] READ MORE

Not Horses, Not Zebras, A Unicorn?

by Amy Clugston July 22, 2015 4 comments When I think of my daughters 18 year diagnostic odyssey and the well-known saying that is shared in the rare disease community about what physicians are taught; “When you hear hoof beats, think horses, not zebras” thinking horses or zebras didn’t work for us when we heard hoof beats. The rare disease community needs physician […] READ MORE

The Nameless One

by Katie Wright January 16, 2015 4 comments Everyone who has child with a named disease or syndrome has had to go through some sort of undiagnosed journey. We all start at the same place...the beginning, which can feel more like the end. From the moment you see or sense something is not the way it should be is the moment it all […] READ MORE