Welcome to the Loeys-Dietz Syndrome Foundation

Months ago, many families with Loeys-Dietz syndrome (LDS) desired to find the families around the United States (and the world) with LDS; to help support them; to help other families get appropriate diagnoses; to educate medical professionals and communities about LDS. Out of that desire, the Loeys-Dietz Syndrome Foundation was formed.

There is still a lot we are learning about LDS, and as a new Foundation, there is a lot we are learning about how to answer the needs of the LDS community. Each day new members are finding us and asking what we’re about, sharing their stories and looking for ways to get involved.

If you have any questions, suggestions, comments, or if you are interested in being involved, fill our a Membership Application on our Volunteer page or email a member of our Board. We're here for you and love hearing your stories, struggles and successes!

Welcome to our community! We're glad you're here.

We're here to provide information about what LDS is and to provide hope for those impacted by the condition. Recently some of our families gathered to talk about their journey with LDS and to film a short video about LDS and the hope they have.

Loeys Dietz from Fifth and Main Productions on Vimeo.

Special thanks to Alex at Fifth And Main Productions, and our own Dukic/Batajanski/Dragicevik family in the Detriot/Windsor area for making the video happen.

The LDSF is a 501(c)3 non-profit organization organization dedicated to:

• encouraging education about Loeys-Dietz syndrome and related connective
  tissue disorders to medical professionals and lay communities in order to aid
  in identification, diagnosis and treatment of Loeys-Dietz syndrome
• fostering research about Loeys-Dietz syndrome
  
• providing a support network, for individuals, parents and families
  affected by Loeys-Dietz syndrome

Loeys-Dietz syndrome (LDS) is a genetic disorder that affects the connective tissue in the body. The disorder was first observed and described by Dr. Bart Loeys and Dr. Hal Dietz at the Johns Hopkins University School of Medicine in 2005.

Individuals with LDS exhibit a variety of medical features in the musculoskeletal, skin and cardiovascular systems. Information about the natural history and management of individuals with LDS continues to evolve.

LDS manifests itself in a number of ways, therefore no two persons with LDS will have identical medical characteristics. It is recommended that you consult with your physician or a local geneticist if you have questions about individual health concerns.