In order to continue to learn about our community's experience with COVID-19, we are asking for your help with this research study that consists of a brief survey to better understand outcomes.

It is important that we get a balanced view about how people are doing with COVID infection and vaccination. We hope to hear from you if you or your family member have done well since the onset of the pandemic or if you or your family member have had problems. Everyone's experience is valuable.

We continue to recommend the advice given by the CDC and the Marfan Foundation Professional Advisory Board and support vaccine use in the connective tissue disorders community.

To participate in this study on behalf of yourself or for family member, please fill out one study form per individual with a connective tissue disorder. If you are filling out the form for a family member, answer for that family member.

We are asking for participation of:

  • People living in the United States
  • Individuals older than 18 years with MFS, LDS or EDS
  • Parents of children (ages less than 18 years) with MFS, LDS or EDS
  • Family members of individuals with MFS, LDS or EDS who passed away after Jan 1, 2020

If you are filling this out for a child age 5-11, and are intending to vaccinate them for COVID-19, we would ask that you return to this survey about 8 weeks after their second COVID-19 vaccination to fill the survey out. We will send out monthly reminders.

Answering the survey questions implies consent for participation in this study. If you choose to provide your contact information, it implies your consent to contact you for additional information.

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