2022 Digital Lupus Advocacy Summit

All times are Eastern.

11:00 am          |    Virtual lobby opens
Starting at 11 am Eastern, log into the Digital Summit to get acclimated with the virtual space, check out our partners in the Exhibit Hall, and visit the Advocate Lounge to connect with your fellow advocates from all over the country before the day’s sessions begin.

12:00 pm          |    Opening session

12:15 pm          |    Identifying Disparities to Create Equity in Lupus Care
People with lupus that have been socially or economically marginalized have poorer outcomes for reasons that are multifactorial including lower quality healthcare. Learn what the lupus community is doing to create a more equitable healthcare experience by acknowledging the role of social determinants of health and recommending actionable solutions that can improve the lives of everyone living with lupus. 

1:15 pm            |    Break

1:30 pm            |    Clinical Trial Diversity: Improving Treatments, Ensuring Access
Diverse participation in clinical trials is essential to the development of new and more effective therapies for lupus. However, minority populations have been and continue to be underrepresented in lupus clinical trials. Join this session to learn how people with lupus are breaking down the barriers that have limited trial participation and how those efforts not only can improve the development of new treatments, but also ensure access to those treatments.

2:30 pm            |    Break

2:45 pm            |    The Next Generation of Lupus Treatments
The past two years have seen unprecedented progress in lupus research, with multiple new treatments approved for the disease. In this session, leaders from the lupus research community will share the latest news not only about these new treatments, but also those on the way for systemic and cutaneous lupus.

4:00 pm            |    Closing remarks

4:30 pm            |    Youth Congress
As in year’s past, the Foundation will offer Summit programming exclusively for lupus advocates under 21 and their families. During this session, you’ll learn about seamlessly transitioning from pediatric to adult medical care, as well as attending school with lupus and coping strategies for those unique stressors from specialists in the field. Youth advocates and their families are encouraged to also participate in the main Digital Summit programming as their interests and schedules allow.

All times are Eastern.

12:00 pm          |    Opening session

12:15 pm          |    Your Partner: Providing Answers, Support, and Hope
Living with lupus can be hard. The Lupus Foundation of America has resources to answer your questions about lupus, support your daily management of the disease, and provide you with hope. Learn about the Foundation’s resources, hear from lupus warriors on how they’ve used programs, and take a closer look at the features available within our new, free, online self-management program, SELF: Strategies to Embrace Living with Lupus Fearlessly.

1:00 pm            |    Break

1:15 pm            |    Next Level Advocacy
With fifty state governments and thousands of local governments, LFA’s advocacy goes far beyond the federal level. In this session, hear about how we are building the infrastructure to effectively advocate wherever decisions affecting people with lupus are being made and how you can be involved throughout the year.

1:45 pm            |    Making the Healthcare System Work for You
People with lupus often face challenges navigating their healthcare, including coverage denials, financial obstacles and other barriers to quality care. In this session, you will learn more about how you can take control of your healthcare, identify resources available to help and receive tips from a professional Patient Navigator who will share their experience working in support of people with lupus.

2:30 pm            |    Closing remarks

3:00 pm            |    Preparing for Virtual Congressional Meetings
This session will review everything you need to know about meeting virtually with your members of Congress the following day. We’ll review the issues we’re advocating for, talking points you can use and how to effectively participate in virtual meetings or conference calls with your members of Congress. Note: access to this session is available only to advocates who registered for the Summit prior to May 22, 2022 and opted in to participate in virtual meetings with their members of Congress.

On June 29, Summit participants can advocate in one of two ways:

• Virtual congressional meetings. If you registered for the Summit prior to May 22 and opted in to this option during registration, you'll have virtual meetings scheduled with the offices of your U.S. Representative and at least one of your U.S. Senators. You and other advocates from your congressional district or state will meet with your elected officials or their staff via Zoom or teleconference and advocate for policies to improve the lives of people with lupus. 
  
  To participate in virtual congressional meetings, you must have been registered for the Summit and opted into this option prior to Sunday, May 22. Learn more about the process for virtual congressional meetings.
• 2022 Virtual Advocacy Day. Advocates who chose this option during registration or who registered for the Summit after May 22, 2022, are invited to participate in our annual Virtual Advocacy Day. Advocates will contact their members of Congress via email and social media and urge them to support policies to improve the lives of all people with lupus.

Anyone from anywhere can participate in this online event! No matter what your connection to lupus is, the 2022 Summit will have something for you. It’s going to take all of us to win the fight against lupus, so whether you are living with lupus yourself, a caregiver for someone with lupus, a physician caring for those with lupus, or passionate about the fight against lupus for any other reason, we wholeheartedly welcome your participation in the Summit.

And while we welcome global participation on the first two days of the Summit, there is one small caveat — to participate in the virtual congressional meetings or Virtual Advocacy Day on Wednesday, June 29, you must have congressional representation, which means you must be a current US resident. If you reside outside of the US, World Lupus Day on May 10 will provide opportunities for you to engage your elected officials.

Nope — we are proud to offer the entire 2022 Digital Lupus Advocacy Summit completely free of charge. While we wish we could safely host an in-person Summit in Washington, DC this year, we’re excited that the 2022 Summit will be the most accessible and largest lupus advocacy event in history, and we can’t wait to once again bring together the entire lupus community in one digital space this June to continue pushing us towards our shared goal: a world without lupus.

There are two ways advocates will contact their members of Congress on June 29, the final day of the Summit.

1. Virtual congressional meetings. If you registered for the Summit prior to May 22 and opted in to this option during registration, we'll schedule virtual meetings for you with the offices of your U.S. Representative and at least one of your U.S. Senators. On June 29, you and other advocates from your congressional district or state will meet with your elected officials or their staff via Zoom or teleconference and advocate for policies to improve the lives of people with lupus. 
   
   To participate in virtual congressional meetings, you must have been registered for the Summit and opted into this option prior to Sunday, May 22. Learn more about the process for virtual congressional meetings.
2. Virtual Advocacy Day. If you chose this option or are registering for the Summit after May 22, on the morning of June 29 we'll email you links to contact your members of Congress via email and social media urging them to support policies that improve the lives of people with lupus. The links will include pre-populated messages for your elected officials – all of the Virtual Advocacy Day actions can be completed in less than five minutes, but they still make an enormous impact!

There is no deadline to register for the Summit, but we encourage you to register early so that you receive all of the exciting updates and important information we send out as we get closer to the start of the event.

You should expect all of the best elements of an in-person conference, but from the comfort and safety of your own home. We have worked incredibly hard to put together a digital event that captures everything our advocates have come to love about the annual National Lupus Advocacy Summit. That means timely, informative content delivered by world-renowned lupus experts, opportunities to connect with and learn from lupus advocates all across the country, and impactful conversations with elected officials that have the power to support policies to improve the lives of all people with lupus. 

All of this, and much more, will take place in an easy-to-navigate online platform that will make you feel like you are actually at an in-person conference. 

Absolutely! We understand that everyone is busy and might not be able to tune in to each and every session of the Summit. The good news for the first two days of the Summit is that a recording of each session will be available for on-demand viewing until late July, so if you miss something live during the Summit, you can log back into the platform at a time that is convenient for you and catch what you missed. Please note that it usually takes around 24 hours for the live recordings to process and upload back into the platform. 

For the final day of the Summit,  Virtual Advocacy Day will take you 5 minutes or less to participate and it can be done whenever you have the time. Please see the previous question for more information about advocacy on Wednesday, June 29.

If you can navigate this webpage, you’ll be able to navigate the Summit platform. It’s very intuitive and even if this will be your first digital conference, once you see the space, you’ll pick it up quickly and access everything easily. If you do find that you need help, we will have someone available to answer technical questions during each day of the Summit — but for context, they only had to answer 3 questions during last year’s Digital Summit, and that’s why we are so confident you won’t have any problems. 

The only thing you need to participate in the 2022 Summit is an internet connection and a device with a web browser — phone, tablet, or computer. The Summit platform is responsive and will work on any device, but for the best experience, we do recommend participating via tablet or computer. If your device has a camera, you will have the option to participate in video chats with our partners in the Exhibit Hall, but it’s not required. Closer to the Summit, we will send out some more tips to get the most out of your experience, as well as who to contact if you do have any issues.

You don’t need to do anything right now, but we would absolutely love it if you would help us spread the word about the 2022 Summit! If you are involved with a lupus support group or have friends, family members, or colleagues who you think might be interested in the Summit and learning more about lupus, let them know about it by sharing on your social media channels or through other communications. With no charge to participate, and no cap on attendees, it’s truly a “the more, the merrier” situation. 

Prior to the Summit beginning on June 27, we’ll be sharing exciting announcements about the agenda and speakers, as well as more information to make sure you are fully prepared for the event. If you signed up to participate in virtual congressional meetings on June 29, you’ll receive more information about your meetings over the coming months as well. If you have any questions at all about the Summit, please email Travis Smith.