Connective Issues - Summer 2020

RESOURCES YOU NEED NOW

COVID-19 Resources When COVID-19 brought increased uncertainty to the Marfan and related conditions community, the Foundation’s Professional Advisory Board members stepped up to answer important questions and clarify the virus’ risk to our community. A compilation of all the Foundation’s COVID-19 resources can be found at Marfan.org/Covid19 . You will find links to medical statements related to coronavirus and how it impacts our community, medical webinars given by members of the Professional Advisory Board that answer the community’s questions, details about changes to the Foundation’s programs, and several Spanish language resources. We will continue to provide resources about the current public health crisis as it related to Marfan and related conditions based on your needs.

The level of expertise represented coupled with the tight community bond fostered by the Foundation is so powerful and appreciated these days. Thank you!

Virtual Medical Symposium Webinars No matter the current landscape, we want you to have access to the best medical information about Marfan, VEDS, Loeys-Dietz, and other genetic aortic conditions. Through our Virtual Medical Symposium Webinar series, you can access a range of relevant and important topics on genetic aortic conditions, presented by leading medical experts. Recent topics include Pregnancy and Marfan Syndrome, Eye Issues and Treatment, and Dental Concerns. View these and other topics anytime at Marfan.org/MedicalWebinars .

I am grateful for this specialized information. I so appreciated the extra time that was taken to answer my question via email. It's a real comfort to have access to this knowledge.

Virtual Support Groups We’ve all gotten pretty creative the past months when it comes to making connections with other people. Remote classrooms, online games, and virtual hangouts are part of daily life now. Did you know that you can take those virtual meeting skills and use them to connect with members of the Marfan and related conditions community? We offer five virtual support groups each month where you can join the conversation or just listen to others with experiences similar to yours. Additionally, we offer groups specifically for those affected by VEDS through The VEDS Movement division. Register for any virtual support group at Marfan.org/SupportGroups .

What you do is absolutely wonderful! The access you have to high quality experts is invaluable. We've learned so much from the webinars.

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Summer 2020