irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $148KThe organization provided public education and advocated for those impacted by lupus and autoimmune diseases in various states and federally through education meetings, briefings, seminars, forums, public testimony, and written comments. The organization also distributed informational materials, newsletters, and issue briefs; developed poster presentations; and represented the lupus and autoimmune patient perspective at education and advocacy initiatives to improve access to medical care and treatments and advance biomedical research to improve patient quality of life. The organization also provided a $25,000 education grant to the Masonic Medical Research Institute to support their general education program and Summer Fellows education program.
- #2 $49KThe organization promoted disease awareness by disseminating information at virtual and in person health and wellness events; participating in media interviews, press releases, speaking engagements and press conferences; posting information and resources to websites and through social media, blogs, op-eds, videos, and e-mails; and hosting informational booths in exhibit halls to improve disease awareness to the general public, medical professional community, public officials, the media, researchers, the healthcare industry, and people with lupus and allied diseases and their loved ones.
named programs · 5 · from sources
What they call their work
BIO International Convention Participation
Sends representatives to the BIO International Convention to advocate for patient-centered policies and innovation in biotechnology and healthcare.
LN PFDD Meeting Partnership
Partners with the National Kidney Foundation on the Externally-Led Lupus Nephritis Patient-Focused Drug Development meeting to collect and present patient insights to the FDA and pharmaceutical industry.
Lupus Community Exhibit at ACR Convergence
Sponsors an annual exhibit at the American College of Rheumatology (ACR) Convergence to distribute educational materials and resources to healthcare professionals and industry stakeholders, while elevating patient voices through advocate participation.
Third Annual Lupus Walk
Co-sponsors a research walk with the Masonic Medical Research Institute (MMRI) in Utica, NY, combining community engagement with advocacy and fundraising.
World Lupus Day and Lupus Awareness Month
Hosts annual awareness campaigns in May, including daily social media facts, the #HatsOn4Lupus event, and tea parties to educate the public and engage the lupus community.
activities · 6 groups
What they do
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Healthcare Policy Advocacy 2 activities
- Facilitating patient advocacy training and stakeholder collaborationRuns the "Make Your Voices Heard" program to train and empower patients and families to advocate on healthcare access, research, and policy issues. Facilitates collaboration among stakeholders in the lupus and autoimmune disease space to align advocacy, awareness, and research priorities.
- State and federal advocacy for lupus policy and research fundingEngages in advocacy at state and federal levels by joining coalitions, submitting comments, signing on to letters, participating in legislative recognition events, and advocating for increased federal funding. Successfully contributed to passage of legislation including $22 million for lupus research and education, and supported programs like the National Lupus Patient Registry and DoD Lupus Research Program.
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Nonprofit Sector Research & Data Analysis 1 activity
- Conducting patient-centered research and publishing findingsConducted Patient Listening Sessions via virtual roundtables and a survey of U.S.-based patient advocacy organizations on health economic assessments. Published reports including The Lupus: Patient Voices Report and the Elevating the Patient Voice in HEAs Report to inform policymakers and researchers.
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Autoimmune Disease Research Funding 1 activity
- Funding lupus and autoimmune disease research through grantsFunds external research organizations and academic institutions through targeted grants supporting pediatric lupus, innovative research, and specific programs such as the Marc R. Chevrier Lupus Research Memorial Fund. Has cumulatively awarded $3,454,952.70 in research funding since 1990, including $539,724 in the most recent fiscal year.
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Patient and Family Support Services 1 activity
- Patient support services including hotline, financial assistance, and empowerment toolsOperates a telephone hotline, provides financial assistance for prescription drugs and biologics used in treating systemic lupus erythematosus, and offers patient empowerment tools and self-management programs. Hosts virtual events such as tea parties and community celebrations to support patients and care partners.
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Public Awareness and Educational Outreach 1 activity
- Public education and awareness programs for lupus and autoimmune diseasesConducts public education initiatives through seminars, forums, health events, media engagement, public speaking, press releases, digital content distribution, and social media campaigns including "31 Days of Lupus Facts" during Lupus Awareness Month. Distributes newsletters, issue briefs, brochures, webinars, treatment updates, and online resources to improve patient knowledge and access to care.
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Uncategorized 2 activities
- Co-leading patient-focused drug development and FDA engagement initiativesCo-led the Lupus Patient-Focused Drug Development (PFDD) Initiative, including organizing the 2017 Patient Voices Meeting with the FDA. Produced The Lupus: Patient Voices Report based on input from over 2,100 individuals to inform regulatory decision-making about patient experiences and treatment needs.
- Sponsoring patient and care partner attendance at medical conferencesSponsors individuals with lupus and their care partners to attend major rheumatology conferences such as ACR Convergence and the Rheumatology Nurses Society Annual Conference. Supports patient representation in sessions like the Patient Perspectives Program and ARP Sessions, and maintains a Lupus Community Exhibit at scientific meetings.
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financials · form 990 · fy2024
revenue
Total revenue$987K
Contributions & grants$894K91%
Program service revenue$00%
Investment income$94K10%
Other revenue$0
expenses
Total expenses$740K
Program expenses100%
Admin / overhead0%
Fundraising0%
Salaries & benefits$0
Grants paid out$565K
Largest expense lineFacilities
balance sheet
Total assets$2.83M
Cash$2.82M
Investments$0
Liabilities$0
Net assets$2.83M
Liquid reserves45.8 mo
5 years on record · 2020–2024 · YoY revenue -8.2%
leadership · form 990 part vii · fy2024
Who runs it
board members · 10
- Anne M Zablotowicz — 2nd Vice President
- Brian J Vogel — Director
- David L Arntsen — Secretary
- Dina Thachet — Director
- Jacqueline L Taylor — Director
- Jane M Porter — Director
- Kathleen A Arntsen — President and CEO
- Lori A Vogel — Treasurer
- Meghan P Valadez — Director
- Sandra M Frear — 1st Vice President
relationships · 79
Who they work with
- AfPA Partner — Launched PrescriptionProcess.com, a resource to help patients understand and navigate the prescription access process.
- Alliance for Gout Awareness Coalition — Co-hosted a joint reception with LADA at the American College of Rheumatology meeting.
- Alliance for Patient Access Partner — Network of physicians supported in advocating for patient access to approved lupus therapies
- American Autoimmune Related Diseases Association Partner — Partnered with LADA on the Autoimmune Awareness Month Campaign.
- American College of Rheumatology Network — LADA has attended the ACR annual meeting for 20 consecutive years to engage with the rheumatology community.
- American College of Rheumatology Partner — Partner organization through its program The Lupus Initiative, focused on reducing health disparities in lupus
- American College of Rheumatology Partner — Sponsored the Lupus Community Exhibit at the ACR Convergence Scientific Meeting
- Amgen Partner — Platinum-level supporter of LADA's Make Your Voices Heard Program.
- Arthritis Foundation Partner — Provides educational resources, support groups, and research information relevant to lupus patients
- AstraZeneca Partner — Bronze-level supporter of LADA's Make Your Voices Heard Program.
- Biotechnology Innovation Organization Partner — Participated in the BIO International Convention for ten consecutive years
- Bristol Myers Squibb Partner — Gold-level supporter of LADA's Make Your Voices Heard Program.
- Center for Information & Study on Clinical Research Participation Partner — Provides educational resources on clinical research participation for patients and communities.
- Childhood Arthritis and Rheumatology Research Alliance Partner — Funds pediatric lupus projects through the Childhood Arthritis and Rheumatology Research Alliance in Washington, DC.
- Childhood Arthritis and Rheumatology Research Alliance Partner — Receives research funding from LADA to support pediatric lupus research initiatives.
- Coalition for Clinical Trials Awareness Partner — Collaborates to promote public awareness of the benefits and importance of clinical trials.
- Color of Gastrointestinal Illness Partner — Focused on health equity and support for BIPOC communities affected by chronic illnesses including autoimmune diseases
- Genentech Partner — Platinum-level supporter of LADA's Make Your Voices Heard Program.
- GlaxoSmithKline Partner — Gold-level supporter of LADA's Make Your Voices Heard Program.
- Global Healthy Living Foundation Coalition — Co-hosted a joint reception with LADA at the American College of Rheumatology meeting.
- Global Healthy Living Foundation Partner — Advocates for improved access to care and education for people with chronic illnesses including lupus
- Healthwell Foundation Partner — Collaborates to provide co-payment assistance for lupus treatments through a dedicated lupus fund.
- Immune Recovery Foundation Partner — Provides co-pay assistance for prescription, treatment, premiums, and medical travel costs to qualified individuals affected by lupus and other autoimmune diseases.
- Infusion Access Foundation Coalition — Co-hosted a joint reception with LADA at the American College of Rheumatology meeting.
- Infusion Access Foundation Partner — Advocacy partner focused on ensuring access to provider-administered medications for complex illnesses including lupus
- Institute for Clinical and Economic Research Partner — Collaborated with ICER on health economic assessments for lupus nephritis therapies.
- International Alliance of Patients' Organizations Network — Full member of the International Alliance of Patients' Organizations (IAPO), promoting global patient advocacy.
- International Foundation for Autoimmune & Autoinflammatory Arthritis Partner — Collaborates to support patient voice in education, advocacy, and research for autoimmune arthritis diseases
- Johns Hopkins University Arthritis Center Partner — Source of information on diagnosing, treating, and managing arthritis and related conditions including lupus
- Johnson and Johnson Partner — Platinum-level supporter of LADA's Make Your Voices Heard Program.
+ 49 more
strategies · 2
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Patient Empowerment Through Educationmethodology: patient_empowermentBy equipping patients and families with knowledge about lupus, emerging therapies, and the healthcare system, we improve treatment access and self-advocacy because informed patients are better able to navigate care, engage in policy, and participate in research decisions that affect their lives.
- Patient Voice as Catalystmethodology: patient_voice_amplificationBy centering the lived experience of patients and care partners in advocacy, research, and policy settings, we produce more relevant and impactful outcomes because patient perspectives identify unmet needs, prioritize meaningful endpoints, and increase engagement in healthcare and research initiatives.