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2020 National Lupus Advocacy Summit: Frequently Asked Questions

At the Lupus Foundation of America, the health and well-being of people with lupus is our highest priority. Due to the growing concern around the coronavirus disease 2019 (COVID-19), and in alignment with recent recommendations laid out by the U.S. Centers for Disease Control and Prevention (CDC) and other health experts, we have made changes to the 2020 National Lupus Advocacy Summit.

The 2020 National Lupus Advocacy Summit will now be an entirely digital event. No in-person activities will take place in Washington, DC. Panel sessions and presentations originally planned on Monday, March 16 will now take place online.

Please review the FAQs below for answers to all your questions about this change and how you can be involved with the first-ever Digital Summit! This page will be updated as more information becomes available.

Updated: March 10, 2020, 11:37 am

Travel-Related Questions
Is the 2020 National Lupus Advocacy Summit canceled?

No. The 2020 Summit has not been canceled. However, for the health and safety of our constituents, partners, employees and the community, and in alignment with best practices laid out by the CDC, World Health Organization, and other relevant entities regarding coronavirus disease 2019 (COVID-19), we are revising our 2020 National Lupus Advocacy Summit to be an entirely digital event.  There will be no in-person training or meetings.  We hope you will continue to participate in this online event.

We are looking forward to your participation in the Digital Lupus Advocacy Summit on Monday, March 16, and on Virtual Advocacy Day on Tuesday, March 17!

Should I cancel my hotel reservations?

We have notified the conference hotel (The Mayflower Hotel) that we no longer will host an in-person Summit at the hotel this year. Rooms at The Mayflower Hotel should be canceled online using the confirmation email you received after you booked the room, or by sending an email to Jessica Dankos. Please be sure to cancel your room at least 3 days prior to your arrival date or cancellation fees may apply.

If you made your own hotel reservations, you should contact the hotel directly and inquire about their cancellation policy.

Should I cancel my travel arrangements?

Yes, you should immediately contact your airline, bus or rail service to cancel your travel reservations. If you need a letter about the in-person event being canceled due to COVID-19, please let us know and we will provide one for your use.

Will the Lupus Foundation of America refund my Summit registration fee?

Yes, we will refund the full Summit registration fee to all participants, and will begin that process immediately. We are working through this process as fast as we can, but please allow up to 2 weeks for the refund to be processed and the funds to be returned to your account.

Will the Lupus Foundation of America help pay for my cancellation or rescheduling fees?

No, we are not able to provide reimbursement for airfare and/or hotels. Many airlines and hotels are offering flexible refund options at this time due to the COVID-19 situation. Please contact your airline and hotel directly to review options.

What if I still want to come on my own?

We advise that people with lupus refer to the CDC’s travel guidelines and COVID-19 prevention for people at higher risk of getting very sick from COVID-19.

If I still plan to come to Washington, DC, what activities will you offer?

All the content and programming for the 2020 National Lupus Advocacy Summit will be available online as part of our reimagined Digital Lupus Advocacy Summit. The Lupus Foundation of America will no longer be hosting large in-person group activities in connection with the event. This is in alignment with the CDC, WHO, and other relevant entities regarding COVID-19.

2020 Digital Lupus Advocacy Summit
What is the Digital Lupus Advocacy Summit?

The Digital Lupus Advocacy Summit is an immersive, experiential online environment that will include live broadcasts of the programs and panels that were originally schedule to occur on Monday, March 16. Digital Summit attendees will still be able to connect with their fellow advocates, learn from the experts in lupus research, and engage with our partners in the Exhibit Hall, just as they would have at the in-person event. You will be able to access the program online. Those who were registered to attend the Summit in-person will be emailed the link. For those who were not registered to attend in-person, the link will be added to the Summit web page at lupus.org/Summit and there will be a very brief registration process.

Is there a cost to participate in the Digital Summit?

The online experience and all of its content is free. For those who were registered to attend the Summit in-person, you will automatically receive email updates about the online content. To those who were not registered to attend in-person, we will distribute the registration link when it is available later this week. 

How will the Digital Summit be different than the one that was planned for Monday?

The Digital Summit program will include most of the panel discussions that were scheduled to be conducted live at The Mayflower Hotel.  As soon as we have all of the details worked out, we will send that information to you by email and also post the information to the Summit web page at lupus.org/Summit.

How will I access the Digital Summit?

Once the registration page is built, we will distribute that link and post it to lupus.org/Summit. There will be a short registration process, and then you will create a login and password that you will need to access the online environment on Monday, March 16. For those who were registered to attend the Summit in-person, the logins will be created for you and distributed later this week.

What should I expect to happen during the Digital Summit?

We are in the process of finalizing the agenda, with the hopes of holding as closely to the agenda that was planned for the in-person event as possible. Once the final agenda is available, it will be posted to lupus.org/Summit and it will also be available in the Digital Summit environment on Monday, March 16. For now, you can view the agenda that was planned for the in-person event on that page to get a sense of the types of topics we will be covering.

Can I invite others to participate in the Digital Summit?

Yes! The Digital Summit is open to the entire lupus community. It will include presentations on the latest in lupus research, navigating the healthcare system, and how to participate in advocacy year-round. Details will be available at lupus.org/Summit as they are confirmed. 

What is the Exhibit Hall and Will it still occur?

The Digital Lupus Advocacy Summit will feature a one-day Exhibit Hall on Monday, March 16, and all attendees can visit before, after, and in between Summit sessions. The Exhibit Hall will feature booths hosted by our partners in the fight against lupus, and it will be open to our entire constituent base.

You'll be able to visit booths featuring the latest in lupus research, resources, surveys and interactive displays. Through a unique points structure, attendees will be able to take different actions to earn points and the attendee with the most points at the end of the day will win a brand new Bluetooth speaker prize pack!

Meetings with Congressional Offices
Will I still have meetings with my congressional offices?

If you were registered to attend the Summit in person, you will still have an opportunity to speak with your members of Congress on Tuesday, March 17. Your previously-scheduled meetings will remain on as scheduled, but instead of taking place on Capitol Hill, they will now take place via phone conference. For those who were registered to attend in person, we will communicate this information with you directly.

If you were not registered to attend the Summit in-person, we are not able to schedule meetings with your members of Congress at this point. However, after the Digital Summit, we would be happy to work with you to help you set up meetings with your members of Congress back home during one of the many congressional recesses throughout the year. On Tuesday, March 17, you will be able to contact your members of Congress digitally through our Virtual Advocacy Day (more information below).

Can I schedule my own meetings?

For those who were registered to attend the Summit in-person, you do not need to - we have already scheduled meetings for you with your two U.S. Senators and one U.S. Representative. If you were not registered to attend in-person, we ask that you not attempt to schedule your own meetings around the Digital Summit as it will cause confusion among Hill staff at a time when things are already changing rapidly.

That said, if you are interested in meeting with your members of Congress at any point throughout the year, we will happily work with you to talk through that process and assist you!

Virtual Advocacy Day
What is a Virtual Advocacy Day?

On Tuesday, March 17 the Lupus Foundation of America is inviting advocates across the country who were not already registered for the 2020 National Lupus Advocacy Summit and do not have meetings scheduled with congressional offices to participate in Virtual Advocacy Day. It is a way for you to engage with your members of Congress and expand on the work that advocates who were registered to attend in-person will be doing during their live meetings with their members of Congress.

What is the difference between the Digital Lupus Advocacy Summit and Virtual Advocacy Day?

The Digital Lupus Advocacy Summit is replacing the in-person National Lupus Advocacy Summit. It will be an immersive, experiential online environment featuring a series of presentations on the latest in lupus research, navigating the healthcare system and how to participate in advocacy year-round, among others. This program is open to all who registered for the in-person Summit and those who would like to join now. This will take place on Monday, March 16.  

On Tuesday, March 17, everyone will have an opportunity to engage with their members of Congress in two different ways.

  • Advocates who were registered to attend the Summit in-person will participate in conference calls with the offices of their members of Congress. These meetings are already scheduled but are being transitioned to conference calls to reflect the cancellation of in-person events. 
  • Advocates who were not registered to attend the Summit in-person will be invited to participate in Virtual Advocacy Day. These advocates will be encouraged to send emails to their members of Congress sharing their story and urging them to support increased funding for lupus research and education programs.
How does Virtual Advocacy Day work?

Virtual Advocacy Day participants will contact their Senators and Representative by email to tell their lupus story and urge members of Congress to support the critical lupus research and education programs. Once you have registered for the Digital Summit, you will receive an email on the morning of March 17 letting you know exactly how you can participate throughout the day.

How will I know which members of Congress I should contact for Virtual Advocacy Day?

We will tell you! When you participate in Virtual Advocacy Day you will be asked to provide your address, and then our system will automatically identify your members of Congress and generate a sample email that you can send to them directly from our website. We encourage you to customize the email, sharing your specific experience with lupus and how the disease has affected you.

How do I know what to say to members of Congress when I contact them?

Once you enter your address and the system identifies your members of Congress, it will draft for you a sample email that you can send as is, or customize to reflect your personal experience with lupus. Once you are happy with the letter, sign your name to it, click submit, and it will be delivered directly to your member of Congress' inbox!