Lupus Foundation of America

The Lupus Foundation of America (LFA) is a national voluntary health organization dedicated to improving the lives of people affected by lupus and accelerating progress toward better treatments and cures. Founded in 1977, the organization operates from Washington, D.C., through a national network of chapters, offices, affiliates, and community support groups across the United States. Its work combines medical research, patient and caregiver education, direct support, public awareness, and advocacy before government and research institutions. LFA frames its mission around solving the scientific and practical challenges associated with lupus, a group of chronic autoimmune diseases that can affect multiple organs and vary substantially from person to person. Rather than functioning as a commercial product brand, the organization serves as a public-facing nonprofit platform for people with lupus, their families, healthcare professionals, researchers, policymakers, and donors. Its programs are intended to address both near-term quality-of-life needs and longer-term scientific questions about the causes, diagnosis, treatment, and prevention of lupus. Research is a central part of the foundation’s identity. LFA supports scientific work through direct grants to researchers at medical and academic institutions, efforts to expand federal and private investment in lupus research, and programs designed to help patients understand and locate clinical trials. Its Center for Clinical Trials Education provides information about trial participation, research terminology, and issues that patients may consider when evaluating a study. The foundation’s research strategy links grantmaking with advocacy, aiming to strengthen the overall lupus research ecosystem rather than relying only on one type of intervention. Education and support are delivered through the organization’s website, medically reviewed informational materials, referrals, health education services, and the National Resource Center on Lupus. The resource center was developed after a national needs assessment conducted in 2016 and is designed to connect people affected by lupus with reliable, accessible information and emotional or practical support. LFA has also developed educational materials in English and Spanish, with content addressing different stages of life and audiences, including children, teenagers, caregivers, and healthcare professionals. Its national network and health educator services extend information beyond formal clinical settings and help people navigate questions about symptoms, treatment, healthcare access, and participation in research. Advocacy is another defining part of the LFA model. The organization works with lupus activists, members of Congress, federal agencies, state legislatures, research funders, and representatives of the pharmaceutical and biotechnology sectors. Its advocacy agenda seeks greater public investment in biomedical research, stronger recognition of lupus as a health priority, and policies that improve the experience of patients and caregivers. The foundation also uses public awareness programs to explain the disease and counter limited public understanding of lupus. Walk to End Lupus Now is LFA’s signature fundraising and awareness program. Community events create opportunities for patients, families, volunteers, and supporters to gather while raising funds for research, education, advocacy, and support programs. The organization’s KNOW LUPUS multimedia campaign similarly seeks to increase recognition of lupus and its effects through public education and donated media exposure. LFA is organized as a charitable organization with tax-exempt status under Section 501(c)(3) of the United States Internal Revenue Code. It is also identified in the reference material as a BBB Accredited Charity and as highly rated by Charity Navigator. Its public identity is therefore based on nonprofit service, credibility, community mobilization, and disease advocacy rather than commercial sales. The foundation remains active and nationally oriented, with its current role centered on connecting people affected by lupus to trustworthy information and support while advancing research and public policy.

The Lupus Foundation of America was established in 1977 as a national voluntary health organization devoted to the needs of people living with lupus. From its beginning, the foundation developed a model that combined patient services with efforts to advance medical understanding. Its national structure has included chapters, offices, and support groups intended to connect a central organization with local communities throughout the United States. Over time, LFA expanded beyond conventional patient information services into a broader research and advocacy institution. Its research program supports investigators at medical institutions and promotes additional investment from federal agencies and private-sector research organizations. The foundation also created mechanisms to help patients understand clinical research and identify potentially relevant trials. This approach reflects the difficulty of lupus research, where scientific uncertainty, varied disease manifestations, and the need for patient participation all affect the pace of progress. Education and support became another major pillar of the organization’s work. LFA provides disease information, practical tools, referrals, and guidance for patients, families, caregivers, and healthcare professionals. Its public materials address lupus-related questions in accessible language and include content for different age groups and life circumstances. The organization also provides information in English and Spanish, broadening access for communities with different language needs. In 2016, LFA conducted a National Needs Assessment on Lupus to examine the needs of patients, caregivers, and healthcare professionals. The assessment informed the creation of the National Resource Center on Lupus. The center serves as a centralized platform for trustworthy information, educational resources, programs, and emotional support. It represents a shift toward a more coordinated digital and service-oriented model in which people can locate information and support without relying exclusively on local healthcare or nonprofit contacts. LFA’s advocacy work has grown alongside its research and education activities. The organization mobilizes lupus activists and communicates with Congress, federal agencies, state legislatures, and research stakeholders. Its advocacy seeks increased funding for biomedical research and education, recognition of lupus as a public health priority, and policies that respond to the experiences of people affected by the disease. The foundation presents advocacy as a way to complement private grantmaking and to influence the broader funding environment for lupus research. Public awareness and fundraising have also become important parts of LFA’s national identity. Walk to End Lupus Now provides a recurring community event through which participants raise funds, build visibility, and express solidarity with people affected by lupus. KNOW LUPUS extends the awareness effort through multimedia communication intended to improve public understanding of the disease. These programs connect donor engagement with the organization’s research, education, support, and advocacy mission. The foundation is a 501(c)(3) charitable organization in the United States. Its nonprofit status and charity evaluations form part of its public credibility, while its national network allows it to operate as both a centralized source of information and a community-based support system. Today, LFA remains focused on the combined goals of improving quality of life for people affected by lupus, expanding access to reliable education and support, increasing investment in research, and ultimately helping solve the scientific causes of lupus and develop more effective treatments.

• 2016

  National needs assessment conducted

  [1]Lupus Foundation of Americaen.wikipedia.org

  LFA carried out a national assessment of the needs of people with lupus, caregivers, and healthcare professionals, helping shape later education and support initiatives.

• 1977

  Foundation established

  [1]Lupus Foundation of Americaen.wikipedia.org

  The Lupus Foundation of America was founded as a national voluntary health organization focused on lupus research, education, support, and advocacy.

• National Resource Center on Lupus developed

  [3]National Resource Center on Lupuslupus.org

  The foundation created the National Resource Center on Lupus as a centralized source of medically reviewed information, programs, and support resources.

• Walk to End Lupus Now expanded nationally

  [4]Walk to End Lupus Nowlupus.org

  Walk to End Lupus Now became the foundation’s signature community fundraising and awareness program, linking local events with national research, education, support, and advocacy work.

A national nonprofit lupus organization that combines research funding, trusted health information, community support, public awareness, fundraising, and government advocacy.

• Health information and support platform

  National Resource Center on Lupus

  The National Resource Center on Lupus is LFA’s centralized information and support service. It organizes medically reviewed material about lupus, treatment, symptoms, living with the disease, caregiving, and healthcare navigation. The center is intended to help patients and families find dependable information while also providing resources for healthcare professionals and people seeking emotional or practical support.

• Clinical research education

  Center for Clinical Trials Education

  The Center for Clinical Trials Education helps people affected by lupus understand clinical research. Its resources explain research terminology, identify questions and considerations for prospective participants, and provide access to a clinical-trial search tool. The center supports informed decision-making without replacing advice from a patient’s healthcare team.

• Fundraising and community awareness program

  Walk to End Lupus Now

  Walk to End Lupus Now is a community-based fundraising and awareness program. Participants, families, volunteers, and supporters gather at local events to increase visibility for lupus and raise funds for the foundation’s research, education, support, and advocacy activities. The program also provides a public setting for people affected by lupus to build community.

• Public awareness campaign

  KNOW LUPUS

  KNOW LUPUS is LFA’s multimedia public education campaign. It is designed to improve recognition of lupus, communicate the disease’s impact, and encourage broader public understanding and support. The campaign uses donated media and awareness messaging as part of the foundation’s wider effort to make lupus more visible.

• Walk to End Lupus Now

  United States

  LFA’s signature fundraising and awareness initiative uses community walks to bring together people affected by lupus, their families, volunteers, and donors. Proceeds support research, education, support, and advocacy, while the events provide local visibility for a disease that is often poorly understood.

  Outcome. The program became a recurring national platform for community engagement, fundraising, and public awareness.

  Source
• KNOW LUPUS

  United States

  This multimedia campaign communicates basic information about lupus and its effects, aiming to improve public recognition and encourage support for affected individuals and families.

  Outcome. The campaign increased the reach of LFA’s public education work through donated media and broad awareness messaging.

  Source

• 2016

  Use national needs assessment to reshape patient resourcesStrategy

  Background

  LFA undertook a national assessment to better understand the needs of people with lupus, caregivers, and healthcare professionals.

  Action taken

  The organization used the assessment as a basis for developing the National Resource Center on Lupus and strengthening centralized education and support services.

  Aftermath

  The resource center became a core part of LFA’s public-facing education and support infrastructure.

  Source

1. 1Lupus Foundation of Americaen.wikipedia.org
2. 2Lupus Foundation of America official websitelupus.org
3. 3National Resource Center on Lupuslupus.org
4. 4Walk to End Lupus Nowlupus.org
5. 5KNOW LUPUSlupus.org