Loeys-Dietz Syndrome Foundation

Healing Hearts.
Inspiring Hope.


Our purpose is to provide information about what Loeys-Dietz syndrome (LDS) is and to provide hope for those impacted by the condition. We hope that through our website, newsletter, social media outlets and other resources, you will find medical information and personal support to assist you and your family on your journey with LDS.


What is 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. Since then, other groups around the world have described additional genetic causes of Loeys-Dietz syndrome.




How You Can Help


Fundraising Opportunities

By gathering family and friends who want to help make a difference, participating in fundraising events increases support for the Loeys-Dietz Syndrome Foundation, as well as builds awareness about LDS. From bowling to 5K runs to happy hours to jewelry – we have several fundraising opportunities available.

Plan Your Event ⟶


Tribute gifts

The Tribute Program of the Loeys-Dietz Syndrome Foundation provides a meaningful way to recognize and commemorate the important people and occasions in your life. You can honor a family member or friend, celebrate a special occasion, or remember a loved one. You can create a tribute page, make a donation to support an existing tribute page, or give directly to the LDSF.

Setup Your Donation Site ⟶



The Loeys-Dietz Syndrome Foundation is always looking for more people to get involved and join our community. If you have a request or would like to help the LDSF further our mission, please email

Join the Team ⟶


Share Your Story

We love getting to connect with Loeys-Dietz families and hearing your stories of inspiration and hope. If you would like to share your story, please visit our Stories page and complete the online form. We will then be in touch with you to record your story on video or via transcription.

Share Your LDS Story ⟶



As the LDSF moves forward to meet the educational and resource needs of its community, we are asking for you to consider financially supporting our mission.

Donate Now ⟶


The Loeys-Dietz Syndrome Foundation 2018 Annual Report

We have accomplished so much this year, and are so proud of the strides our foundation has made in education, connection, and research.