The Loeys-Dietz Syndrome Foundation has developed various resources to support the LDS community.
There is still much to be learned about LDS. These fact sheets, created in collaboration with the National Marfan Foundation (NMF), provide a quick and concise resource of helpful information.
The medical terminology associated with a condition such as Loeys-Dietz syndrome can be confusing and overwhelming. The LDSF had developed a glossary to help define terms you may come across in your LDS journey.
As a parent of an LDS child, knowing how to communicate with your child's school can be challenging. Find a sample letter, emergency information and school-specific facts in this PDF packet to help open the lines of communication between you and your child's educational institution.
Video presentations by medical professionals presented at the June 2012, LDSF conference in Baltimore, MD can be viewed on the LDSF YouTube channel.
Video presentations by medical professionals presented at the June 25, 2010, LDSF conference in Baltimore, MD can be viewed here:
Questions and Answers from medical presentations at the June 25, 2010, LDSF conference in Baltimore, MD. Topics include: genetics, cardiac surgery, allergies and gastroenterology, orthopedic surgery and vascular surgery.
Peter Donato, a teen with LDS discusses his experience at the Living Successfully Panel at the 2010 National Marfan Foundation Conference in Houston, Texas.