Article featuring a fundraising event for Ella
Tyler Paper Article featuring Rosie
WCSH 6 - NBC Portland featuring Tess
ABC News Story Covering the Familiy's Journey to Diagnosing USP7
5News Covering Ella-Marie and her rare diagnosis
DailyMail article discussing the role of social media
The Atlantic - Building A Community
Seattle Times - Needle in the genetic haystack: How a new UW website is helping families, scientists
Washington Post - What do you do when you have one of the rarest diseases around?
KQED - Stirrings of Hope for Families Isolated by Rarest of Genetic Conditions
USA Today - Her doctors couldn't solve her health mystery, but Facebook did
DNA Science Blog discussing the role of social media
KQED - Through Social Media, Family Connects to Rare Diagnosis – And Hope
EurekAlert - Solving a genetic mystery