Lupus Foundation of America

Public information and education:the Lupus Foundation of America conducts outreach and offers programs and services to support our organizational goals of reducing time to a Lupus diagnosis, ensuring people with Lupus have an arsenal of safe and effective treatments, and expanding direct services and increasing access to treatment and care. In 2023, the Foundation continued to expand its reach through its website, online education programs, awareness campaigns, social media marketing, celebrity engagement and community partnerships. Our website is the leading source for lupus-related information, with an online audience of more than 11 million visits annually. Our social media channels have 448,000 combined followers across the six most popular social channels.in order to leverage our extensive reach to improve the lives of all people with Lupus, we created and executed multiple social media campaigns as part of our "spotlight series." These campaigns call attention to the unique impact of Lupus among different populations and audiences, sharing important resources and raising awareness of health disparities. During Lupus awareness month in may the Foundation's theme was "make Lupus visible." Each week throughout the month we highlighted a different topic of the often-invisible ways Lupus impacts everyday life. We shared a useful resource tied to the topic, supporting educational information and facts about Lupus, as well as videos from people with Lupus. Our efforts to raise awareness spanned social media, email and media placements. We secured several local media placements focused on raising awareness with interviews held with Foundation ambassadors, including interviews at nbc12 richmond, koin portland, abc7 dc and nbc ct, and with several other media outlets. The Foundation also spearheaded the annual global observance of world Lupus day on may 10. We developed and executed a world-wide "make Lupus visible" social media campaign to share Lupus education facts and statistics, leveraged through the sharing of various tools, messages and images to successfully raise awareness of Lupus and its impact on a global scale. In partnership with the world Lupus federation (wlf), the Foundation developed awareness and advocacy messages, tools, materials, Lupus fact shareable images and more -- all part of a digital Lupus awareness toolkit hosted on worldlupusday.org. We executed a strategic communications effort to share and promote the toolkit to all wlf members and supporters both leading up to and on world Lupus day as part of a global and collaborative social media campaign.through our advocacy efforts in 2023, we supported Lupus research and education by:--hosting over 200 Lupus advocates for 179 meetings on capitol hill for the first in-person national Lupus advocacy summit since the pandemic, resulting in positive action on policies to improve access to care for people with Lupus. Additionally hosting the 2023 digital advocacy summit, sending nearly 3,000 Lupus advocacy messages to advocate for increased research funding and policies to improve the lives of all people with lupus.--advocating $30 million in funding for lupus-specific research and education programs for fy24, which if enacted would be the most funding congress has ever approved for lupus-specific programs in a single year:$15 million to support the national Lupus patient registry program within the u.s. centers for disease control and prevention, which if enacted would bring total funding for the program to more than $115 million since its creation in 2003$13 million for the Lupus research program at the department of defense, which would bring total funding for the program to nearly $90 million since it was first funded in fiscal year 2017$3 million for the office of minority health and their national Lupus training, outreach, and clinical trial education program, a program that is implementing education and outreach initiatives to improve clinical trial diversity$50.9 billion for the national institutes of health, the world's largest public funder of Lupus research--leading a training of the Lupus research action network, a group of people with Lupus who are trained in peer-to-peer education related to Lupus clinical trials and research, with a specific goal to increase minority participation in Lupus research and clinical trials. The training was conducted as a key component of the Foundation's impact+ (increasing minority participation and awareness in clinical trials) grant with the u.s department of health and human services (hhs) office of minority health (omh).--partnering with top national patient organizations to lead the immunocompromised collaborative. The collaborative advocates for state and federal policies that recognize the unique needs of people living with Lupus during the covid-19 pandemic, including vaccines, therapies, reopening protocols, access to health care, and other public health initiatives and guidelines. --continuing to elevate the patient voice in drug development, providing the Lupus patient perspective to congress and the fda, including as the fda continues to develop its patient focused drug development (pfdd) guidance series, and helping to lead pfdd works, a group of top patient organizations working together to elevate the patient perspective in drug development and to inform regulatory decision-making. --leading the market access working group, composed of people with Lupus and key opinion leaders working to increase access and reduce barriers to quality care. As part of this effort, the Foundation engaged in federal and state advocacy initiatives, including to eliminate health plan step therapy policies, co-pay accumulators and other policies that restrict, delay and deny people with Lupus access to the care they need, when they need it.--continuing to lead the maprx coalition, a group of more than 60 national patient advocacy organizations dedicated to protecting and strengthening the medicare part d prescription drug benefit for 44 million americans with disabilities. In 2023 the coalition held multiple congressional briefings to educate leaders on capitol hill about medicare policy and engaged the centers for medicare and medicaid services as it began to implement provisions of the inflation reduction act, specifically provisions championed by maprx, including:a $2,000 out-of-pocket cap to limit costs for those on medicare part d.a "smoothing mechanism" that will allow part d beneficiaries to spread high-drug costs throughout the plan year.expanded eligibility for the low-income subsidy in part d to increase affordability.removal of cost-sharing for vaccines in medicare part d, a major public health victory.--leading a network of nearly 40,000 grassroots advocates from every state and 435 congressional districts who helped advance lupus-related public policy priorities.

Research:due to recent advances in therapies, roughly 97 percent of Lupus patients are able to live at least 5 years after diagnosis. Research focused on improving the quality of life for people living with Lupus and advancing our understanding of the disease remains necessary. Our national research program mirrors that of the national institutes of health (nih) where the action plans are focused on addressing key areas related to Lupus research including:--lupus as a spectrum disease.--development of new technologies to close the gap in our understanding of disease mechanisms.--supporting the development of novel treatment paradigms.--working in tandem with partners to support Lupus research and research training. The Foundation continues to lead initiatives to overcome barriers that inhibit progress in developing and approving new, effective and tolerable treatments for people with Lupus, including:--leading the addressing Lupus pillars for health advancement (alpha) project, a global multi-phase initiative to identify and address top urgent and unmet issues that will improve Lupus outcomes. In 2023, the project work expanded patient-provider communication efforts to address barriers to accessing high-quality clinical care. This work will continue into 2024 with formative evaluation exercises planned for the purpose of unraveling challenges to patient-provider engagement. The alpha global advisory council also addressed critical issues related to time to diagnosis and explored the benefits and risks of defining Lupus as a spectrum. The drug development working group convened a meeting on clinical trial outcome measures in Lupus that highlighted challenges in accurately accounting for Lupus heterogeneity across the age continuum and the importance of measuring outcomes important to people living with Lupus. This work on disease definition and drug development was published in Lupus science & medicine as two separate papers in the alpha series in early 2023.--supporting a multi-year study of mesenchymal stromal cells as a potential treatment for Lupus. The medical university of south carolina continues to lead the study in partnership with the national institute for allergy and infectious diseases. Eight of the nine clinical sites continue to enroll participants, and investigators expect to finish the study in late 2025. --recruiting more than 900 new people with Lupus and caregivers to participate in research accelerated by you (ray), a Lupus data platform for people with Lupus and caregivers to share anonymized information about their Lupus experience. We also worked to increase diverse representation within ray by using evidence-based approaches to increase recruitment of underrepresented populations. The ray data platform was upgraded in 2023 to enhance communication capabilities and build capacity for frequent notification about clinical trial participation opportunities. This will allow us to collect data over the lifespan of the participant, which will enhance our capabilities to assess the natural history of disease and ascertain additional insights about the experience of living with Lupus. The data platform serves as a conduit to help researchers accelerate the development of new treatments and improve disease outcomes using patient-first and patient-centric approaches.--funding graduate and undergraduate student fellowships and early career development grants to support a new generation of Lupus clinician-scientists. These awards address a severe loss of current and future Lupus investigators due to a decline in federal training support. Partnering with Lupus canada for a fourth year to manage their catalyst grant, which provides one-year funding to canadian researchers at any stage in their careers. Throughout the year, we aggressively pursued strategies to increase federal, state and industry support for Lupus research. We also facilitated strategic collaborations, led global alliances to drive consensus and provided direct financial support to researchers through the Foundation's peer-reviewed research grant programs. These efforts lay the groundwork for Lupus research to lead to significant treatment breakthroughs.the Foundation also expanded and launched new strategic partnerships with organizations that play a central role in advancing Lupus science. Part of the Foundation's efforts and support for these strategic partnerships included:--funding the next two years of the impact (improve pregnancy in aps with certolizumab therapy) phase ii trial of a biologic therapy to prevent adverse outcomes in high-risk pregnancies among patients with antiphospholipid syndrome, with or without systemic Lupus erythematosus.--funding for systemic Lupus erythematosus collaborating clinics (slicc), a global body of Lupus experts, to update the slicc damage index, the only food and drug administration (fda)-accepted outcome measure for Lupus clinical trials.--participating in Lupus abc, a public-private partnership led by the Lupus research alliance in collaboration with the food and drug administration to improve Lupus clinical trial outcome measures.--partnering in the treatment response measure for sle (trm-sle) project where we work to prioritize the patient voice on the steering and advisory committees for the project.through our direct funding support and various Foundation initiatives, we invested close to $1 million to fund peer-reviewed research grants, awards to investigators, research partnerships and collaborative projects.as part of our research funding efforts, the Foundation also worked with congress to secure more than $22 million in public funding for Lupus research and education programs in fy23 and are working to secure an additional $30 million in fy24. The Foundation also helped secure a $2.5 billion increase in funding for the nih in fy23 and have advocated for nearly $60 billion in fy24 funding for the nih, which is the world's largest public funder of Lupus research.

Network support and services:the Foundation's national network includes chapters, regional offices, ambassadors and support groups across the united states. Network affiliates conduct education programs and support research, along with providing information, support and advocacy to improve the quality of life for those affected by lupus.the Foundation provides network affiliates with capacity-building services, organizational development, strategic support, training and consultation. Our national ambassador program continues to grow, with these committed and specially-trained volunteers playing a vital role in supporting the Foundation's mission. We have over 200 trained ambassadors who provide community-based, peer-to-peer education and support. The Foundation also provides oversight and resources to more than 45 national support groups and 71 trained support group facilitators who serve constituents nationwide. In 2023, the Foundation expanded its support groups to serve more people affected by Lupus. These groups include: men who are living with Lupus, a youth group for individuals under age 25, a hispanic/latino support group which offers help in english and spanish, an asian support group that provides help throughout the country as well as internationally, caregivers and care partners for Lupus patients, and a group for black/african american women who are living with Lupus. We offer both in-person and virtual support groups to ensure greater access to this valuable resource for all people living with Lupus. The Foundation continues its leadership role of the wlf, a global coalition of roughly 250 Lupus patient advocacy groups from 75 countries. The federation's mission is to advance Lupus awareness and advocacy initiatives that bring greater attention and resources to the fight to end Lupus worldwide. In 2023, the wlf completed two big projects that were identified as priorities based on the results of its 2021 wlf needs assessment, and that would meet an immediate need for several wlf-member Lupus organizations. The first project was the development and completion of a new co-branded "understanding Lupus'' fact sheet in spanish that we provided to four spanish-speaking, patient-oriented organizations located outside the u.s. The second project was the successful production of a webinar for wlf member organizations entitled "creating peer-led Lupus support groups." More than 25 attendees from Lupus organizations around the world participated. The Foundation also engaged with volunteers and supporters throughout the u.s. we held 21 walk to end Lupus now events across the country allowing for important connection and engagement among walk participants, sponsors and volunteers, as well as the opportunity to raise awareness and funds vital to improving the quality of life for all people affected by Lupus. In addition, a virtual 'celebration' was held to allow for participation from across the country, including those not comfortable participating in-person, or those without a walk in their local community. The virtual 6 challenge, 6 days to complete 6 miles, replaced the Foundation's in-person endurance program, team make your mark and continues to provide a unique opportunity for people across the country to participate in the way that best meets their needs and interests. In addition, more than 173 content creators joined us for game on! To end Lupus, our three day live stream event where streamers from around the world raise awareness of Lupus and funds for Lupus research.

Patient education and support:the Foundation remains a leader in Lupus education, and once again provided education, support, and other assistance to individuals with Lupus, their families and caregivers.our educational website, the national resource center on Lupus (nrcl), remains the most comprehensive Lupus education site available. The nrcl serves as the first stop for people searching for basic information on Lupus and local resources. We continued to create health education resources in a variety of formats and languages covering topics important to people with Lupus. We published more than 55 health education resources on the nrcl in english and spanish in the past year. The nrcl had more than 6 million pageviews in 2023.we produced eight new episodes of our patient education podcast, the expert series, featuring Lupus experts offering information and insights into essential topics. The podcasts are available through lupus.org, youtube, itunes, and spotify. Topics for 2023 included Lupus remission, bone health, and the visible and invisible symptoms of Lupus. There were more than 12,000 plays across the 2023 episodes. Our 12-week Lupus self-management email series, take charge, continued to grow, gaining 2,203 subscribers in 2023. The email series, which is aimed at providing people with Lupus with the knowledge they need to better manage their health, has an unsubscribe rate of under 2% across all the emails. In september, 2023, we launched tome control, a culturally and linguistically appropriate spanish version of take charge. Lupus and you: answers, advocacy, action (Lupus & you) continued to be offered virtually in 2023. In 2023, our national Lupus & you quarterly series reached 4,580 people, providing people with Lupus opportunities to participate in this informative and helpful program no matter where they live. We were also able to offer our first ever national Lupus & you event in spanish.our online Lupus self-management program called strategies to embrace living with Lupus fearlessly (self) also continued to grow. Self is a free, online, evidence-based, self-management program designed to help people with Lupus build and enhance skills in four pillars of Lupus self-management: managing symptoms, managing stress, managing medications and working with their healthcare team. In 2023, self gained 1,185 participants. In september, 2023, we launched the self companion app to make the program more accessible to users.in addition, our team of health education specialists responded to 2,264 inquiries received via telephone, email, and handwritten letters in english and spanish and guided people to the appropriate information to manage their Lupus. The health education specialist's Lupus information packet, a digital document available in english and spanish, was downloaded 4,937 times over the course of the year.

Professional relations and education:our professional education programs are designed to develop and increase knowledge, skills and professional performance of all healthcare providers who treat people with Lupus. Within these programs, we work to translate research findings into public health recommendations for physicians, other healthcare professionals, and their respective organizations. In 2023, we continued to focus on expanding partnerships with organizations that serve medical and other healthcare professionals. In particular, the Foundation partnered with the rheumatology nurses society and the hhs/omh to develop an educational program for nurses called Lupus conversations: let's talk about Lupus, clinical trials, and race. The goal of the program is to address racial and ethnic disparities in Lupus clinical trial participation. Clinical trials with a diverse array of participants are essential for the development of new and effective Lupus therapies, but racial and ethnic minority populations have been and continue to be underrepresented in Lupus clinical trials. The evidence-based educational program includes a free certification for nurse educators accredited session and role-play video discussing the barriers and facilitators to clinical trial participation among black/african americans. The course is designed to meet the educational needs of rheumatology nurses, nurse practitioners and physician assistants. Over 100 nurses participated in the training. This year we saw a record number of manuscripts submitted to the Foundation's peer-reviewed, open-access journal, Lupus science & medicine (ls&m), which publishes data and analysis from important and pivotal studies of all aspects of Lupus and related diseases. The current impact factor for ls&m is now 3.9, which is the highest for any lupus-specific journal and ranks it among the most prominent journals in rheumatology. In 2023, we also relaunched ls&m's podcast, producing 8 episodes with a total of 3,817 plays. The impact factor along with the podcast will raise the visibility of the journal and increase manuscript submission.through a partnership with astrazeneca, we continued our national outreach and education efforts to increase Lupus awareness and access to Foundation resources and tools among community health workers (chws). While local efforts focused on in-person training and connections with chws, a national chw Lupus education hub was created on the nrcl. The chw hub features on-demand learning modules to increase chw's knowledge about Lupus including the signs and symptoms, treatments, resources and support available to those living with Lupus. As frontline public health professionals with shared life experience, trust, compassion, and cultural and value alignment with the communities where they live and serve, chws play a vital role in the health of the community. The training content can be used by chws to educate and support people with Lupus in their communities. The hub features five key topics: understanding Lupus, diagnosing Lupus, treating Lupus, managing Lupus, and Foundation resources. To date, over 2000 chws have been engaged through in-person and virtual Lupus training opportunities.