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2021 Digital Lupus Advocacy Summit

Digital. Memorable. Impactful.

The nation's largest lupus advocacy event went digital again in 2021! From March 2-4, 2021, thousands from the lupus community came together virtually for two days of educational and networking opportunities focused on lupus advocacy, research, and drug development. Finally, advocates met virtually with their members of Congress to advocate for policies to improve the quality of life for everyone affected by this disease.

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 meant we were not able to come together in Washington, DC in 2021 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 were so excited to present the second-ever Digital Lupus Advocacy Summit!

From March 2-4, 2021, thousands of your fellow lupus advocates came together in an immersive, experiential online platform 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, advocates heard from the leading lupus researchers about the latest breakthroughs (and those soon to come!), as well as interacted with experts in the field about lupus advocacy, care, and support. On the final day of the Summit, advocates participated in virtual meetings with their members of Congress to tell the lupus story and urge them to support policies to improve the lives of everyone affected by lupus.

The impact of the 2021 Digital Lupus Advocacy Summit

At the 2021 Digital Lupus Advocacy Summit, thousands of lupus advocates came together virtually to connect with each other, learn from their peers and from experts in the field, and advocate for all people affected by lupus. Read our recap of the Summit to learn more about their experiences and the impact of the Summit.

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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 advocated 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 scheduled meetings with their members of Congress on March 4.
  • 2021 Virtual Advocacy Day. Advocates who registered for the Summit after February 8, 2021, or who are not interested in meeting virtually with their members of Congress on March 4, were invited to participate in 2021 Virtual Advocacy Day. Advocates contacted their 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 2021 Digital Lupus Advocacy Summit
group
3,903 advocates

registered to participate in the 2021 Summit.

capitol
310 virtual meetings

with members of Congress on March 4, 2021.

pencil
3,158 emails

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

Youth Programming

For lupus advocates under 21 and their families, the 2021 Summit once again featured a youth track focusing on topics specific to growing up with lupus. There were also 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.

2021 Summit Sponsors

2021 Summit sponsor logos

Biotechnology Innovation Organization

Eli Lilly and Company

Exagen, Inc.

Faegre Drinker

Meijer Specialty Pharmacy

Progentec Diagnostics, Inc.