The Annual Family Conference is a wonderful opportunity to connect with other families that truly understand living with a rare diagnosis. Parents, grandparents, affected adults and their families gather to learn the latest research developments, discuss health management, honor our lost loved ones and offer one another unconditional support and friendship, and this year we're connecting virtually so you can join from any location! 

Please note that given the nature of the virtual conference this year and the fact that you may attend from anywhere around the world, all of these sessions will be held in English with times listed in Eastern Daylight Time (EDT). After you've successfully registered to attend, please watch your inbox for more information, including the schedule of events, access to the the Zoom session links and Crowd Compass attendee mobile and desktop application.  

Please contact Becky Benson, Conference and Family Services Coordinator
here with any questions or concerns that are conference related.