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COVID-19

Surveillance Epidemiology of Coronavirus (COVID-19) Under Research Exclusion for Vascular Anomalies. Researchers need information on COVID-19 and vascular anomalies.
 
If you have a vascular anomaly and contract COVID-19, please ask your doctor to complete the brief questionnaire below.
 
The SECURE-VA registry is a collaborative worldwide registry for healthcare providers to report COVID-19 in vascular anomaly patients. We hope to quickly characterize the impact of COVID-19 on people with vascular anomalies. The study is anonymous and meets exemption criteria under federal regulations.
If you have a vascular anomaly and you contract COVID-19, please provide the link below to your doctor. The form is quick to complete.
 
COVID-19 Frequently Asked Questions for Complex Vascular Anomalies

The complex vascular anomalies community advocates have jointly collaborated with our medical advisors to develop a FAQ information sheet for COVID-19 information as it relates to our populations. Please remember this is for general information purposes only. It is not intended to be a substitute for professional medical advice, diagnosis or treatment.

Specific situations might cause a variance in response, and if you are not sure, always seek the advice of your physician or other health care provider as they are the most familiar with your situation.
There will likely be changes to this document in the weeks to come.

Read and download the COVID-19 FAQ's here.

Patient organizations working together for our affected families, on this joint effort, include:
Mellenee Finger - K-T Support
Dana Wolinsky - Project FAVA
Kristen Davis - CLOVES Syndrome Community
Jack Kelly - Lymphangiomatosis and Gorham's Disease Alliance (LGDA)
Karla Hall - National Organization of Vascular Anomalies (NOVA)
Linda Rozell-Shannon - Vascular Birthmarks Foundation (VBF)

Please let us know if you have any additional questions by emailing [email protected]

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