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.
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.
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|
RESOURCES IN SPANISH
|Declaración de asesoría profesional - 13 de marzo||Declaración de asesoría profesional - 16 de marzo|
|Declaración del Presidente y CEO de la Fundación - 17 de marzo||Declaración del Presidente y CEO de la Fundación - 13 de marzo|