irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $0OUR CORNERSTONE IN EDUCATION AND AWARENESS REVOLVES AROUND OUR CREAKYJOINTS WEBSITE TO EMPOWER PATIENTS TO LEARN ABOUT DIFFERENT TYPES OF CHRONIC DISEASES. CREAKYJOINTS IS AN INTERNATIONAL, DIGITAL COMMUNITY FOR MILLIONS OF ARTHRITIS PATIENTS AND CAREGIVERS WORLDWIDE WHO SEEK EDUCATION, SUPPORT, ADVOCACY, AND PATIENT-CENTERED RESEARCH. ALL OF OUR PROGRAMMING AND SERVICES ARE ALWAYS PROVIDED FREE OF CHARGE.
- #2 $0FOCUS HAS BEEN ON CREATING A DIGITALLY ROBUST LIBRARY FOR CHRONIC DISEASE PATIENTS AROUND PODCASTS, YOUTUBE AND SOCIAL MEDIA PROMOTION. CREATING NOT ONLY THE CONTENT TO HELP PATIENTS EDUCATE THEMSELVES ABOUT THEIR CONDITIONS BUT ALSO PROMOTING AND REACHING PATIENTS WHO NEED MORE RESOURCES. WITH OUR REACH EXPANDING BY THE DAY, WE HAVE OVER 1.5 MILLION TOTAL LISTENS ACROSS PLATFORMS ON OUR PODCAST NETWORK, OVER 5 MILLION TOTAL VIEWS ACROSS TWO YOUTUBE CHANNELS, AND OVER 15 MILLION IMPRESSIONS ACROSS ALL MAJOR SOCIAL MEDIA PLATFORMS.
named programs · 5 · from sources
What they call their work
COVID-19 Antiviral Access Survey
Launched in April 2025 to study real-world barriers to accessing oral antiviral treatments among patients with chronic conditions who test positive for COVID-19.
CreakyJoints
International digital community for arthritis patients and caregivers offering education, support, advocacy, and patient-centered research. All services are provided free of charge.
Grassroots Biosimilar Patient Education
Initiative that traveled to 18 states to educate patients and officials about biosimilars, resulting in improved notification practices by health insurers regarding medication switches.
Podcast Network and Digital Content
Produces patient-centered podcasts and YouTube content on chronic disease management, vaccines, and health policy, with over 1.5 million listens and 5 million views across platforms.
Vaccine Advocacy and Education
Provides evidence-based vaccine resources, promotes adult vaccination schedules, and advocates for policies restricting non-medical vaccine exemptions to protect vulnerable populations.
activities · 8 groups
What they do
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Disease-Specific Clinical & Patient Education 4 activities
- Deliver patient education and support during the COVID-19 pandemicOperates the GHLF COVID-19 Patient Support Program, providing free, up-to-date public health information, expert advice, safety guidance, and digital community events tailored to individuals with chronic illnesses.
- Operate CreakyJoints digital community for arthritis patients and caregiversOperates CreakyJoints, a multilingual digital community providing free education, support, advocacy, and patient-centered research for millions of arthritis patients and caregivers in the U.S., Canada, Australia, and Spanish-speaking populations.
- Produce patient-to-patient educational materials on chronic conditionsCreates and disseminates video series and guidelines—such as Migraine Patient and Caregiver Guidelines—that enable patients to make informed decisions about treatment and disease management through peer-shared experiences and evidence-based advice.
- Provide telehealth support through eRheum platformOperates eRheum.org, a digital platform offering educational resources, videoconferencing access, and guidance to help rheumatology patients prepare for and maximize virtual-care appointments.
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Healthcare Policy Advocacy 3 activities
- Advocate for improved healthcare access for people with chronic illnessEngages in grassroots advocacy and coalition-building to improve healthcare access for individuals with chronic conditions, including successful campaigns to require health insurers to notify patients and providers of medication switches for autoimmune diseases, reaching over 15 million people.
- Advocate for vaccine access and public health policy reformAdvocates for improved vaccine adoption by promoting expanded pharmacist authority, supporting limits on non-medical vaccine exemptions, collaborating with organizations like the American Academy of Pediatrics, and submitting formal comments to influence federal and state immunization policies.
- Train and mobilize patient advocates for health policy engagementTrains and activates over 1,600 volunteer patient leaders across all 50 states and internationally to testify before policymakers, publish opinion pieces, submit testimony, and participate in coalition advocacy efforts on Capitol Hill and in state capitals.
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Biomedical Research and Innovation 1 activity
- Conduct patient-centered research through ArthritisPower and other registriesConducts patient-driven research using the ArthritisPower registry and other surveys to study chronic disease impacts, including barriers to antiviral access during COVID-19 and the effects of insurance policies like accumulator bans, producing reports that inform clinical and policy discussions.
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Skin Cancer Screening and Education 1 activity
- Educate beauty professionals on scalp and skin conditions via HEROES ProgramOffers the HEROES Program, a free education and outreach initiative that trains beauty professionals to recognize symptoms of psoriasis and other scalp and skin conditions and guide clients toward appropriate medical care through webinars and resource guides.
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Healthcare Provider Directories and Clinical Support Services 1 activity
- Host PainSpot digital risk-assessment tool for musculoskeletal conditionsHosts PainSpot, an algorithm-based online tool that uses symptom questionnaires to help patients identify potential causes of joint, back, or neck pain and seek timely diagnosis and treatment for musculoskeletal conditions.
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Medical Research & Education Dissemination 1 activity
- Host educational webinars and social media discussions on chronic disease topicsHosts live, interactive webinars featuring medical experts on issues including racial disparities in health care, vaccines, and chronic disease management, and conducts monthly #CreakyChats on Twitter to engage patients in moderated discussions, generating tens of millions of impressions.
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Podcast and Radio Production 1 activity
- Produce health education podcasts through GHLF Podcast NetworkMaintains and distributes a regularly updated library of health-related podcasts via the GHLF Podcast Network, delivering medical information and patient experiences through audio storytelling to chronic disease patients, with over 1.5 million listens reported.
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Uncategorized 1 activity
- Offer interactive patient guides for chronic skin and autoimmune conditionsProvides free, interactive digital guides for conditions such as hidradenitis suppurativa and psoriatic arthritis, covering symptom understanding, wound care, treatment options, insurance navigation, fatigue management, and psychosocial challenges, with tools for note-taking and action planning.
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financials · form 990 · fy2024
revenue
Total revenue$7.17M
Contributions & grants$1.93M27%
Program service revenue$5.07M71%
Investment income$11K0%
Other revenue$153K
expenses
Total expenses$6.95M
Program expenses82%
Admin / overhead17%
Fundraising1%
Salaries & benefits$4.76M
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$1.42M
Cash$263K
Investments$0
Liabilities$1.31M
Net assets$112K
Liquid reserves0.5 mo
3 years on record · 2020–2024 · YoY revenue -0.7%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 7
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| SETH GINSBERG | President | 40 | $422K |
| LOUIS THARP | EXECUTIVE DIRECTOR | 40 | $296K |
| JAMES BUMGARDNER | Vice President | 40 | $288K |
| STEVEN NEWMARK | — | 40 | $262K |
| JOSEPH COE | — | 40 | $249K |
| DAVID CURTIS | — | 40 | $234K |
| SHILPA VENKATACHALEM | — | 40 | $214K |
board members · 4
- CAROL HARRISON — BOARD MEMBER
- JOE SIMENIC — President
- NICHOLAS STERGHOS — BOARD MEMBER
- STEFAN BILL — BOARD MEMBER
relationships · 47
Who they work with
- AIDS Institute Partner — Partner organization collaborating with Global Healthy Living Foundation.
- AIDS United Partner — Partner organization supporting advocacy and community programs.
- Abbvie Partner — Corporate sponsor supporting the organization's community and advocacy efforts.
- All Copays Count Coalition Coalition — Coalition focused on reducing patient out-of-pocket costs, partnered with GHLF.
- American Academy of Pediatrics Partner — Collaborates with GHLF to address disrupted childhood vaccine schedules and promote community immunity.
- American Disease Prevention Coalition Coalition — Works with GHLF to advocate for policies expanding pharmacist-administered vaccinations.
- Amgen Funder — Provided support for the Thyroid Eye Disease Education and Advocacy Hub
- ArthritisPower Partner — Collaborative research registry co-led by GHLF to conduct patient-centered research on arthritis and related conditions.
- California Step Therapy Coalition Coalition — State-level coalition working on step therapy reform, partnered with GHLF.
- Collaborating 4 Care Partner — Healthcare collaboration initiative partnered with GHLF.
- Creaky Joints Network — Sub-brand or affiliated initiative under Global Healthy Living Foundation focused on arthritis and chronic disease patient support.
- CreakyJoints Network — CreakyJoints is the international digital community operated by GHLF for arthritis patients and caregivers.
- CreakyJoints Network — Digital community for arthritis patients and caregivers operated under GHLF as a core program.
- CreakyJoints Network — Program under the Global Healthy Living Foundation providing patient support and education.
- CreakyJoints Network — Shares educational resources on psoriasis and related conditions through the CreakyJoints platform.
- CreakyJoints Partner — Collaborates with CreakyJoints to develop and distribute patient education materials and campaigns.
- CreakyJoints Partner — Digital community platform operated under GHLF for arthritis patients and caregivers.
- CreakyJoints Partner — Grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation.
- Doug Roberts, MD Partner — Independent clinical rheumatologist who created the first version of PainSpot.
- Duke University Partner — Academic institution collaborating with GHLF on research or education initiatives.
- Federal Step Therapy Coalition Coalition — National coalition advocating for federal step therapy reform, partnered with GHLF.
- Florida Step Therapy Coalition Coalition — State-level coalition focused on step therapy reform in Florida, partnered with GHLF.
- Harvard Medical School Partner — Academic medical institution partnered with GHLF.
- Horizon Therapeutics Partner — Corporate partner supporting GHLF initiatives.
- IQVIA Human Data Sciences Partner — Co-publishes research reports with GHLF on vaccine uptake and administration trends in the U.S.
- Janssen Partner — Pharmaceutical company partnering with GHLF to support patient advocacy.
- Johns Hopkins University Partner — Academic institution collaborating with GHLF on health initiatives.
- Lundbeck Partner — Corporate sponsor supporting GHLF’s programs.
- Massachusetts Step Therapy Coalition Coalition — State-level coalition advocating for step therapy reform, partnered with GHLF.
- Oklahomans for Step Therapy Reform Coalition — State-level advocacy group working on step therapy reform, partnered with GHLF.
+ 17 more
strategies · 5
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.
- Community Intermediary Engagementmethodology: community_intermediary_engagementBy engaging trusted community figures—such as beauty professionals—as partners in health outreach, we increase access and trust among underserved populations, because community-embedded messengers reduce stigma and improve intervention uptake.
- Digital Patient Communities as Integrated Support Platformsmethodology: patient_centered_digital_communityBy building patient-centered digital communities, we integrate education, peer support, advocacy, and research participation, because centralized, accessible platforms increase engagement and sustain long-term patient empowerment.
- Patient Empowerment Through Educationmethodology: patient_empowerment_through_educationBy delivering evidence-based education and decision-making tools, we empower patients to lead their own care and advocate effectively, because informed patients achieve better health outcomes and stronger care partnerships.
- Patient-Centered Researchmethodology: patient_centered_researchBy conducting research that centers patient priorities and lived experiences—such as through the ArthritisPower registry—we produce more relevant and actionable medical insights, because patient-driven data improves the validity and applicability of research outcomes.
- Patient-Led Advocacymethodology: patient_led_advocacyBy training and amplifying patient leaders to share personal stories and engage policymakers, we produce more equitable health policies and systemic change, because lived experience fosters authenticity, trust, and moral authority in advocacy.