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COVID-19 UPDATES FOR OUR COMMUNITY

In light of the current public health crisis due to COVID-19, The Marfan Foundation is providing regular updates for the Marfan, VEDS, Loeys-Dietz, and related condition community. Our Professional Advisory Board has collaborated with us to bring you the best medical information on COVID-19 in relation to our community. We are complementing this with guidance to help you cope with the added stress and anxiety that this situation is causing.

As always, the Centers for Disease Control and Prevention (CDC) is a great resource for general information on COVID-19. We recommend reviewing the CDC’s steps to prevent illness and their statement for people at risk for serious illness from COVID-19, which includes those with chronic disease.

If you have additional medical questions, please submit them to our Help & Resource Center through our website.

COVID-19 Update Webinar with Senior White House Advisor: April 26

Since the outset of the COVID-19 pandemic, The Marfan Foundation has brought the Marfan, Loeys-Dietz, and VEDS community the latest information about the virus from leading experts on both COVID-19 and connective tissue conditions.

We are thrilled to announce that our next webinar, to be held on Monday, April 26, 7 pm Eastern, will feature a leading national expert, Dr. Marcella Nunez-Smith, who serves as Senior Advisor to the White House COVID-19 Response Team and Chair of the DHHS COVID-19 Health Equity Task Force. Additionally, Dr. Nunez-Smith is mom to a young daughter who has Marfan syndrome.

Joining Dr. Nunez-Smith as speakers for the webinar are Dr. Kim Eagle, Director of the Frankel Cardiovascular Center at the University of Michigan and Board advisor to The Marfan Foundation, and Dr. Enid Neptune, pulmonologist at Johns Hopkins, who is a long-time member of the Foundation’s Professional Advisory Board.

The speakers will discuss the latest federal guidelines related to COVID-19 and the latest research on COVID-19 that is relevant to the Marfan, Loeys-Dietz, and VEDS community. They will also answer questions from participants.
To register and pre-submit questions, please click here
 

MEDICAL INFORMATION

 
Webinar: Covid & Aortic Conditions: The Latest Research - Jan. 14, 2021
Covid Vaccine Statement - Dec. 22, 2020
Resuming Medical Care - May 4, 2020
Webinar: COVID-19 - Your Questions Answered - April 1, 2020
HIGH RISK PATIENTS AND VENTILATORS - April 2020
Professional Advisory Statement - March 16, 2020
Webinar: COVID-19 and the Marfan and Related Conditions Community - March 13, 2020
COVID-19 Myths Busted - March 2020

QUALITY OF LIFE INFORMATION

 
GOING BACK TO SCHOOL DURING CORONAVIRUS PANDEMIC - Fall 2020
Webinar: Conversation about Coping - March 20, 2020
COPING WITH COVID SUPPORT GROUP - Monday Nights

FOUNDATION NEWS

 
Recording of Foundation Town Hall – April 14, 2020
Statement from the Foundation’s President and CEO - March 25, 2020
Statement from the Foundation’s President and CEO - March 17, 2020
Statement from the Foundation’s President and CEO – March 13, 2020
Events Update

RESOURCES IN SPANISH

 
Declaración de asesoría profesional - 13 de marzoDeclaración de asesoría profesional - 16 de marzo
Declaración del Presidente y CEO de la Fundación - 17 de marzoDeclaración del Presidente y CEO de la Fundación - 13 de marzo