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2021 Digital Lupus Advocacy Summit

Digital. Memorable. Impactful.

The nation's largest lupus advocacy event is going digital again in 2021! Join us from March 2-4, 2021 as thousands from the lupus community come together virtually for two days of educational and networking opportunities focused on lupus advocacy, research, and drug development. Finally, meet virtually with your members of Congress to advocate for policies to improve the quality of life for everyone affected by this disease.

Registration for the 2021 Digital Lupus Advocacy Summit is now open!
Register Now

There is nothing more important to us at the Lupus Foundation of American than the health and safety of our community. Unfortunately, due to COVID-19, that means we won’t be able to come together in Washington, DC this March for the annual National Lupus Advocacy Summit. But we know that advocating for people with lupus is more important now than ever, and that’s why we are so excited to announce the second-ever Digital Lupus Advocacy Summit!

From March 2-4, 2021, join thousands of your fellow lupus advocates in an immersive, experiential online environment to make an enormous difference in the fight against lupus.

The Summit is the keystone of our comprehensive advocacy program that has generated more than $615 million in federal funding for lupus research and education in the last five years alone.

During the first two days of the Summit, you'll hear from the leading lupus researchers about the latest breakthroughs (and those soon to come!), as well as interact with experts in the field about lupus advocacy, care, and support. On the final day, participate in virtual meetings with your members of Congress to tell the lupus story and urge them to support policies to improve the lives of everyone affected by lupus.

We were one of the first organizations to hold an entirely digital advocacy event in 2020, bringing together nearly 3,000 lupus advocates on less than one week’s notice. And in 2021, we have even bigger plans - we hope you’ll join us for this monumental event.

Register now for the 2021 Summit!

The strength of the Summit comes from those who participate - so we hope you'll join us in March to share your ideas, your passion, and your energy. Registration is free and open to anyone passionate about advocating for people living with lupus.

Register Now

Schedule of Summit Events
Tuesday, March 2: Research

All times are Eastern.

11:00 am          |    Virtual lobby opens
Starting at 11 am Eastern, log into the online Summit to get acclimated with the virtual space, check out our partners in the Exhibit Hall, and visit the Networking 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          |    Lupus in the Time of COVID-19
The COVID-19 pandemic has created tremendous challenges for the entire lupus community. Hear from experts in lupus who will discuss the issues that are most important to people with lupus, including vaccines, and share the latest resources available to answer your questions. The session will also discuss the pandemic’s impact on research and what it means for people living with lupus.

1:00 pm            |    Break

1:15 pm            |    Emerging Treatments for Lupus
The past year has witnessed unprecedented progress in treating lupus nephritis as multiple new therapies for the disease are either in development or already have been approved by the Food and Drug Administration (FDA). Potential treatments for systemic lupus and cutaneous lupus are also emerging, providing hope to those living with the disease. Join this session to learn more, including what is on the horizon in 2021, and how people with lupus will benefit.

2:45 pm            |    Break

3:00 pm            |    Innovation and Patient-Powered Lupus Research
People with lupus play a critical role in lupus research and therapy development and today have opportunities to drive lupus research forward in ways that never before existed. Their perspectives and experiences not only help researchers identify what is most important to patients, but also influence decisions made by the FDA and pharmaceutical companies. Learn how you can join people with lupus in advancing lupus research through advocacy, outreach and active participation, ensuring the voices of people with lupus are heard at every stage of research. 

4:00 pm            |    Closing remarks


6:00 pm            |    Youth Congress: Day 1
As in year’s past, the Foundation will offer Summit programming specifically for lupus advocates under 21 and their families. In this session, our partners at the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and social worker, Mariel dela Paz, MSW, will discuss mental health and wellness in youth with lupus. To accommodate digital learning schedules, the Youth Congress will begin at 6 pm Eastern and programming will run until approximately 7:15 pm Eastern. More information about Youth Congress programming will be provided in the coming weeks. Youth advocates and their families are encouraged to also participate in the main Digital Summit programming as their interest and schedule allows.

Wednesday, March 3: Advocacy & Access

All times are Eastern.

12:00 pm          |    Ensuring Access to New and Existing Treatments
Multiple new treatments for lupus may be approved within the next several years. However, will you have access to those treatments? The answer to that question depends on a variety of different factors, including insurance coverage and cost. Join us to learn about the obstacles faced by lupus patients, and what you can do to ensure people with lupus have access to the care they need, when they need it.

12:45 pm          |    Break

1:00 pm            |    Expanding Awareness of Lupus and Resources to Help Manage the Disease
The National Resource Center on Lupus. Take Charge. Be Fierce. Take Control. These are just a few of the programs and resources that have been launched to inform and empower people with lupus. Learn more about how you can participate in and take advantage of these programs to raise awareness of lupus, increase your understanding of the disease and learn how you and your loved ones can better manage living with lupus.

1:30 pm            |    Break

1:45 pm            |    Navigating Lupus: Care and Support Services
Do you know about all of the care and support services that are available for people with lupus and their families? This session will highlight the Foundation’s programs and services that can help you navigate life with lupus and obtain the support and care you need. Learn about our support groups across the country, our online community LupusConnect; our nationwide education series Lupus & You: Answers. Advocacy. Awareness; The Expert Series podcasts; and the information available from our team of experienced Health Education Specialists. Join us to learn how you and your family can take full advantage of these programs and services. 

2:15 pm            |    How People with Lupus Make a Difference Through Advocacy
Lupus advocates are the engine behind everything we do at the Foundation. During this session, you’ll hear from experienced lupus advocates, representing all segments of the community, who have participated in and led advocacy efforts throughout the year on Capitol Hill and their local communities. Hear what they’ve accomplished (and what you can do!) to fight back against this disease and build a better future for themselves and everyone living with lupus.

2:45 pm            |    Closing remarks


3:15 pm            |    Preparing for Virtual Congressional Meetings
This session will review all you need to know about meeting virtually with your members of Congress during the Foundation’s 2021 Advocacy 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: this session is only for those advocates who register for the Summit prior to February 8, 2021, and indicate that they wish to participate in virtual meetings with their members of Congress during registration. Click here for more information.


6:00 pm            |    Youth Congress: Day 2
Join us for day 2 of the Youth Congress where youth and their families can learn more about available resources and support specific to youth with lupus. More information about Youth Congress programing will be provided in the coming weeks. Youth advocates and their families are encouraged to also participate in the main Digital Lupus Advocacy Summit programming as their interest and schedule allows.
 

Thursday, March 4: Advocacy in Action

On March 4, Summit participants will advocate in one of two ways:

  • Virtual meetings with members of Congress. For advocates who registered for the Summit prior to February 8, 2021 and indicated their interest in participating in virtual meetings during registration, the Foundation will schedule meetings with their members of Congress on March 4. More information about this process and its logistics can be found here.
  • 2021 Virtual Advocacy Day. Advocates who register for the Summit after February 8, 2021, or who are not interested in meeting virtually with their members of Congress on March 4, will be invited to participate in 2021 Virtual Advocacy Day. Early on the morning of March 4, you’ll receive an email with more information about how you can contact your members of Congress via email and social media to expand our impact even further.
Karen Miller — Lupus Advocate
I know that we still made a huge impact on Capitol Hill — our elected officials heard our stories and I’m confident that they will support funding for lupus programs that are so important to advancing treatment development and the understanding of this disease.
By the Numbers: The 2020 Digital Lupus Advocacy Summit
group
2,970 advocates

registered to participate, despite less than one week's notice.

capitol
174 virtual meetings

with members of Congress on March 17, 2020.

pencil
2,861 emails

sent to members of Congress as part of Virtual Advocacy Day.

Frequently Asked Questions
Who can participate in the 2021 Digital Lupus Advocacy Summit?

Anyone from anywhere can participate in this online event! No matter what your connection to lupus is, the 2021 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 Thursday, March 4, you must have congressional representation, which means you must be a current US resident. If you reside outside of the US, World Lupus Day in May will provide opportunities for you to engage your elected officials.

Is there a fee to participate in the 2021 Digital Lupus Advocacy Summit?

Nope — we are proud to offer the entire 2021 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 2021 Digital Lupus Advocacy Summit will be the most accessible and largest lupus advocacy event in history, and we can’t wait to bring together the entire lupus community in one digital space this March to continue pushing us towards our shared goal: a world without lupus.

Is there a deadline to register for the Summit?

If you would like to participate in virtual meetings with your members of Congress on Thursday, March 4, you must be registered prior to Monday, February 8. Advocates who register after that date will be encouraged to contact their members of Congress via email and social media as part of our annual Virtual Advocacy Day on March 4. Click here to learn more about virtual congressional meetings.

To participate in the Summit on Tuesday, March 2 and Wednesday, March 3, there is no deadline to register. However, we encourage you to register early so that you receive all of the information we will be sending out prior to the Summit!

I’ve never participated in a virtual conference — what can I expect at the Summit?

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. 

I’m only available for parts of the Summit — can I still participate?

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 April 2, 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. 

If you won’t be available to meet virtually with your members of Congress on Thursday, March 4, you can still participate on the first two days — when you register, just answer ‘No’ to the question about participating in those meetings and we will know not to schedule meetings for you. For more information about the congressional meetings, click here.

I’m not great with technology — will I be able to figure all this out? Do I need anything special to participate?

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 2021 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.

Okay, I registered. What do I need to do next?

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 2021 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 March 2, 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 March 4, 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.

Congressional Meetings

The Lupus Foundation of America was one of the first national organizations to hold an entirely digital event in 2020, and Summit participants held more than 170 virtual meetings with their members of Congress. Based on that experience, we have implemented new policies and procedures that will allow all 2021 Summit participants to have the best possible experience and make a tremendous impact on their members of Congress. Note that to participate in virtual Hill meetings, you must have been registered for the Summit prior to Monday, February 8.

Learn More

Youth Programming

For lupus advocates under 21 and their families, the 2021 Summit will once again feature a youth track focusing on topics specific to growing up with lupus. There will also be networking spaces available to youth affected by lupus to connect with, and learn from, their peers.

Summit Questions

If you have any questions about the 2021 Digital Lupus Advocacy Summit, please contact Travis Smith, Director of Government Relations, at SmithT@lupus.org or 202-212-6778. For sponsorship opportunities, please contact our Corporate Engagement team.

2021 Summit Sponsors

2021 Summit sponsor logos

Biotechnology Innovation Organization

Eli Lilly and Company

Exagen, Inc.

Faegre Drinker

Meijer Specialty Pharmacy

Progentec Diagnostics, Inc.