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.
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May 2024
VEDS Connect
If you have been diagnosed with VEDS, this group is specifically for you! This is an opportunity to meet others with VEDS and talk about the challenges we all face day-to-day.
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 […]
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 […]
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
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 […]
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.
Coping with Grief and Loss
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.
Support for Parents/Guardians of Children w/Marfan, LDS, related conditions
Are you are a parent or guardian of a child with Marfan syndrome, Loeys-Dietz syndrome or a related connective tissue condition? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with one of these conditions. This group meets on […]
Conexiones: Estamos juntos (impartido en español)
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.
Newly Diagnosed & Those Seeking Diagnosis
Are you or a loved one recently diagnosed with Marfan syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you.
Marfan Connect (50+) Support
Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you.
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