In June 2010 approximately 50 families gathered in Baltimore, MD, for the first patient conference, hosted by the the Loeys-Dietz Syndrome Foundation (US). It was the first of its kind since the genetic discovery of Loeys-Dietz syndrome (LDS) in 2005. The conference’s primary objective was to present a handful of extremely dedicated physicians and researchers who addressed a number of medical features that affect LDS patients.
Only two Canadian families were in attendance and they immediately they began to talk about their concerns and share their visions to build a Foundation for individuals diagnosed with LDS in Canada. Since that time we've been actively preparing and filing documentation for our non-profit incorporation in Canada, developing long term strategy, interviewing stakeholders, designing administrative tools and working with the US to collaborate and make both of our communities stronger.
If you have any questions, suggestions, comments, or if you are interested in being involved, email a member of our Canadian Board. We're here for you and love hearing your stories, struggles and successes!
Welcome to our Canadian community! We're glad you're here.