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20 Years of Awareness
 

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 Loeys-Dietz syndrome.

The Loeys-Dietz Syndrome Foundation is a division of The Marfan Foundation. Through this relationship, donations to the Loeys-Dietz Syndrome Foundation are tax-deductible and directly support our shared mission.

 

Upcoming Events

Events
2025 Tampa Walk for Victory
Apr 26
Connection, Walks
2025 Tampa Walk for Victory
Connection, Walks

Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.

Connection, Walks
2025 North Carolina Walk for Victory
Apr 26
Connection, Walks
2025 North Carolina Walk for Victory
Connection, Walks

Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.

Connection, Walks
LDS International Connect Support Group
Apr 28
Virtual Support Groups
LDS International Connect Support Group
Virtual Support Groups

The LDS International Connect is a support group for any person living with Loeys-Dietz Syndrome, as well as parents and caregivers of people with Loeys-Dietz Syndrome. This group is intended for community members living outside of the United States. It is conducted in English. The LDS International Connect meets on the 4th Monday of each month at 2 pm EST.

Virtual Support Groups
Marfan and Related Conditions Connect
May 1
Virtual Support Groups
Marfan and Related Conditions Connect
Virtual Support Groups
Virtual Support Groups
2025 DC Metro Walk for Victory
May 3
Connection, Walks
2025 DC Metro Walk for Victory
Connection, Walks

Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.

Connection, Walks
2025 Northern California Walk for Victory
May 3
Connection, Walks
2025 Northern California Walk for Victory
Connection, Walks

Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.

Connection, Walks
Inaugural Memorable Moments Luncheon
May 4
Inaugural Memorable Moments Luncheon

The Memorable Moments Luncheon is a special event designed to highlight and celebrate significant programs that make a difference in the community. Led by Co-Chairs Alix Jennings & Barbara Lerman, The Inaugural Luncheon will highlight three key programs: Camp Victory, The Marfan Foundation Annual Conference, and The Sydney Lerman Hospitality Program

Teen Game Night
May 5
Connection
Teen Game Night
Connection

Join us for a virtual game night! Teens ages 13-18 are invited to register to join in the fun. We will be playing games using the Jackbox game series.

Connection
LDS Connect Support Group
May 8
Virtual Support Groups, Connection
LDS Connect Support Group
Virtual Support Groups, Connection

Have you been diagnosed with Loeys-Dietz syndrome? This group is a space to talk and connect with people in the community and share what you’re going through with others who understand. The group meets on the second Thursday of every month from 7-8 pm ET.

Virtual Support Groups, Connection
A Time to Talk: Monday Matters!
May 12
Connection, Virtual Support Groups
A Time to Talk: Monday Matters!
Connection, Virtual Support Groups

Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.

Connection, Virtual Support Groups
Coping with Grief and Loss
May 13
Connection, Virtual Support Groups
Coping with Grief and Loss
Connection, Virtual Support Groups

Have you lost a loved one to Marfan syndrome or a related condition? Grief is a long and difficult process. Everyone experiences grief differently, but talking with others who can relate to what you are going through can be very helpful. If you have lost a loved one to Marfan syndrome or a related disorder and would like to connect with others who know what you are going through, please sign up for this group.

Connection, Virtual Support Groups
2025 Pittsburgh Walk for Victory
May 17
Walks, Connection
2025 Pittsburgh Walk for Victory
Walks, Connection

Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.

Walks, Connection
 
 

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.

 
 
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How You Can Help

 
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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 ⟶

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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 ⟶

 
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Volunteer

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 info@loeysdietz.org.

Join the Team ⟶

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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 ⟶

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Donations

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 ⟶

 
 
 

Join Us for Digital Community Events!


As our amazing Loeys-Dietz Syndrome community grows, it is more important than ever that we have fun together! View our calendar for the latest digital and local events.

 
 
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