Know the Signs, Fight for Victory

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April 2024

Heartworks St. Louis

You are invited to join us for a special evening as we celebrate the 15th Anniversary of the Heartworks Gala St. Louis on Saturday, April 27th, as we come together to support the life-saving mission of The Marfan Foundation and build a brighter future for our loved ones affected by Marfan syndrome, Loeys-Dietz syndrome, VEDS, and […]
27 Apr
The Four Seasons St. Louis
999 N 2nd St, St. Louis, MO 63102
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May 2024

Marfan Connect

Are you diagnosed with Marfan syndrome or a related disorder? Are you between 30 and 50 years old? Would you like to connect with others living with Marfan syndrome and related disorders for support and to share resources and information? If so, this group is for you.
02 May
5:00 pm
Virtual
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Walk For Victory – Northern California

Join the Walk for Victory movement!  Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions.  Together, we raise awareness and help families get the best medical care from leading experts.  Together, we help fund events and programs that make life better for our community: […]
04 May
10:00 am - 1:00 pm
Seascape County Park
Sumner Ave, Aptos, CA
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Walk For Victory – DC

Join the Walk for Victory movement!  Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions.  Together, we raise awareness and help families get the best medical care from leading experts.  Together, we help fund events and programs that make life better for our community: […]
04 May
12:00 pm - 3:00 pm
Cabin John Regional Park
7701 Tuckerman Lane Potomac, MD 20854
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Teen Game Night

This is a teen group for teens ages 13-18 with VEDS, Marfan, Loeys-Dietz, or a related condition. Teens are invited to register to join in the fun. We will be playing games using the Jackbox game series.
06 May
7:30 pm
Zoom
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VEDS Parent Support Group for Adult Children

If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center. * If your child is under 18, please register for the VEDS Parents Support […]
08 May
7:00 pm - 8:00 pm
Zoom
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Mindfulness Series: Breathing Into Peaceful Awareness

Join The Marfan Foundation for a free one-hour session of “Breathing Into Peaceful Awareness” as part of our Mindfulness Series. In this session, Sarah Schain, founder of SomoBreathe, LLC, will introduce you to the practice of meditation and breathing, and grounding into your breath and body. Learn how these strategies can contribute to your overall […]
08 May
8:00 pm - 9:00 pm
Zoom
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LDS Connect

If you have been diagnosed with LDS, this group is specifically for you! This is an opportunity to meet others with LDS and talk about the challenges we all face day-to-day. If you have not yet been diagnosed with LDS, please check out the Seeking Diagnosis group here
09 May
7:00 pm - 8:00 pm
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Northwest Genetic Aortopathy & Arteriopathy Program Regional Symposium on Marfan Syndrome, Loeys-Dietz, and Vascular Ehlers-Danlos Syndrome

The Northwest Genetic Aortopathy & Arteriopathy Program Regional Symposium on Marfan Syndrome, Loeys-Dietz, and Vascular Ehlers-Danlos Syndrome is an educational opportunity for healthcare professionals or individuals and families living with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. This event includes a breakout session and Creating Connections luncheon, which enables attendees to network […]
11 May
All Day
Robertson Collaborative Life Sciences Building
2730 S Moody Ave, Portland, OR 97201
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A Time to Talk: Monday Matters!

Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
13 May
Virtual
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