Industry & Competitor Activity
Every industry partnership and mention leaves a digital trace.
Understand how the industry's moving to assess your engagement strategy.
An overview of Alzheimer's patient organization in the US
See where advocacy activity is concentrated, which Patient Organizations influence policy, reimbursement, research, and education, emerging priorities shaping care pathways, under-the-radar patient groups with meaningful contributions and quantifiable examples of advocacy impact
Patient Organizations identified With Alzheimer's as their primary disease area
Geographic Distribution
A look at the concentration of the 126 Alzheimer's Focused Patient Organizations across the United States.
California Insight
Has both the highest number of patients living with AD in the US and not surprisingly, the highest number of independent local Patient Organizations (like Alzheimer's Association San Diego), who have split away from the National Umbrella.
Florida Insight
Miami-Dade is the nation's highest-prevalence epicenter, placing outsized strain on local advocacy resources.
Patient Organization Concentration Heatmap
Disease Focus Distribution of Patient Organizations Active in Alzheimer's
Of the 282 organizations tracked, those with Alzheimer's-related activity are distributed across the following primary disease areas.
Neoplasms (10), Mental Disorders, Down Syndrome (4), ALS (3), Diabetes (3) + 74 others
2nd Annual Northeast Georgia Dementia Symposium: Doubling Down on Dementia
Lewy Body Dementia Association is planning an event featuring dementia-related topics presented in partnership with the Alzheimer's Association Georgia Chapter.
Funding Cut Threatens Landmark Diabetes and Alzheimer's Research
The American Diabetes Association (ADA) has expressed significant concern regarding the cancellation of funding for the DPPOS, which jeopardizes critical research on diabetes prevention and its links to Alzheimer's disease.
AARP Maryland: Knowing the warning signs
AARP Maryland is hosting "Knowing the warning signs: Alzheimer's Awareness" focusing on the early detection of Alzheimer's disease and its symptoms. This session is part of a caregiver series...
Translating Alzheimer's Biomarker Insights Across CNS Diseases
Michael J. Fox Foundation for Parkinson's Research contributed in a publication that shared key lessons learned from AD biomarker development and applied in Parkinson's disease, Huntington's disease...
Strength Analysis of Alzheimer's Focused Patient Organizations
Breakdown of core functional capabilities of the 126 Alzheimer's focused Patient Organizations
Education
88%High focus on lifestyle prevention, caregiver "early sign" awareness, translating scientific breakthroughs to actionable health strategies.
- • Alzheimer's Association
- • Alzheimer's Orange County
- • Alzheimer's Speaks
- • Alz. Research & Prevention
- • Alz. Foundation of America
Significant rise in Scientific Communication and caregiver empowerment. Patient Organizations are translating complex research findings into actionable content.
Patient
Services
75%
Intensive local chapter support, focused around caregiver support and training, detection and diagnostic navigation.
- • Alzheimer's Association
- • Alzheimer's Orange County
- • Alz. Resource of Alaska
- • Alz & Dementia Resource Ctr
- • Alzheimer's Arkansas
Over half of activity is direct support. Efforts center on niche groups, specifically adult children caring for parents and individuals with MCI.
Policy
51%Primary focus has been to drive the "National Alzheimer's Project Act" reauthorization and state-level dementia service funding.
- • Alzheimer's Association
- • Alz. Impact Movement (AIM)
- • UsAgainstAlzheimer's
- • LEAD Coalition
- • Alzheimer's Los Angeles
High state-level activity to ensure infrastructure supports aging populations. Most frequent activity involves "Lobbying" and "Federal Funding" for NIH/NIA.
Market
Access
51%
Focus is almost entirely on securing CMS/Medicare coverage for diagnostics and new treatments.
- • UsAgainstAlzheimer's
- • Alz. Impact Movement
- • Alzheimer's Association
- • Alzheimer's San Diego
Concern that the cost of key diagnostics (PET/CSF) block drug access. Focus on Medicare navigation to prevent "barrier-to-entry" protocols.
Research
33%Leading the push for early-detection technology (AI/Biomarkers) and clinical trial diversity.
- • Alzheimer's Association
- • Alz. Drug Discovery Foundation
- • UsAgainstAlzheimer's
- • Alzheimer's Los Angeles
- • CaringKind
Multi-stakeholders aligning efforts to create standardized datasets and integrate learnings across CNS diseases, to accelerate progress.
Patient Organizations with Broad Digital Reach
Follower counts across major social platforms as insights into their relative digital presence and ability to reach patients online
| Patient Organization Name | Followers | Followers | Mailing List |
|---|---|---|---|
| Alzheimer's Foundation of America | 211,000 | 485 | Yes (3,600) |
| UsAgainstAlzheimer's | 106,000 | 923 | Yes (6,200) |
| Hilarity for Charity | 33,000 | 1,270 | Yes (72,500) |
| UsAgainstAlzheimer's Action | 106,000 | 0 | No |
| LeadingAge | 21,000 | 870 | No |
Digital & Social Reach
The organization's visible online footprint and its ability to engage patients through public digital channels.
Direct-to-Patient Reach
The Patient Organization's capacity to communicate directly, privately, and securely with its community.
Geographic Reach
The breadth on the impact of the Patient Organization's activities geographically (local vs national vs multi-country).
Other Disease-area Patient Organizations Impacting Alzheimer's
3 Patient Organizations whose primary focus area is not alzheimer's but have with high activity volume and meaningful engagement impact in the space.
Charlotte Neuroscience Foundation
Recorded ActivitiesHighest Volume: Highest activity count among non-Alzheimer primary Patient Organizations. Activities focus on localized support groups under the "Memory & Movement Charlotte" banner.
Meaningful Impact: Demonstrates deep, consistent engagement with the caregiver community across multiple neurodegenerative conditions.
Alliance for Aging Research
Recorded ActivitiesStrategic Focus: Challenges existing Alzheimer's measures that may unintentionally limit patient care while also supporting the 15+ million unpaid caregivers.
Systemic Impact: Flagged flawed CMS quality measures for nursing homes regarding antipsychotic use, potentially restricting access for over 3 million residents.
Family Caregiver Alliance
Recorded ActivitiesPolicy & Rights: Activities focus on the infrastructure and legal rights surrounding Alzheimer's care, ensuring family caregivers are recognized.
Legislative Wins: Key voice in winning the Assembly Bill 960 in California mandating hospital access for caregivers and expanding Paid Family Leave.
Key Topics in Policy
Sustainable Research Funding & Budget Protection
- • Alzheimer's Association
- • Alzheimer's Impact Movement (AIM)
- • UsAgainstAlzheimer's
- • LEAD Coalition
Building Early Detection into the Standard Care Framework
- • Alzheimer's Association
- • Alzheimer's Impact Movement (AIM)
- • UsAgainstAlzheimer's
- • LEAD Coalition
Caregiver Support & Financial Relief
- • Alzheimer's Association
- • Alzheimer's Impact Movement (AIM)
- • UsAgainstAlzheimer's
- • Family Caregiver Alliance
Key Topics in Market Access
State-Level Legislative Mandates for Insurance Coverage
Because US healthcare is often regulated state-by-state, Patient Organizations are focusing on localized market access wins.
Coverage for Early Diagnostic Tools (Blood Based Biomarkers)
The primary market access hurdle in the US is currently the reimbursement gap for diagnostics.
Preserving Affordable Insurance Premiums & ACA Tax Credits
Market access is being threatened at the entry point-the ability of patients to afford insurance premiums.
Key Topics in Education
Caregiver Empowerment & Tactical Training
Providing caregivers with specific "how-to" skills for managing daily cognitive and behavioral changes.
Online Course (6 Weeks)Focus on Brain Health & Risk Reduction
Educating the public on how lifestyle, environment, and nutrition impact long-term brain health.
Research Initiative (2026)Community-Specific & Diversity Outreach
Tailoring education to communities that are disproportionately affected by Alzheimer's.
Collaborative WorkshopFinancial & Legal Planning
Addressing the significant economic burden, focusing on asset protection and insurance navigation.
Collaborative GuideMajor Impact of Patient Organizations in Alzheimer's
Tangible examples demonstrating the influence of patient advocacy organizations in driving meaningful outcomes
Codification of Public Health Infrastructure
The Alzheimer's Association and AIM led lobbying efforts for the NAPA Reauthorization Act and BOLD Reauthorization Act (signed late 2024/2025), which officially codified Alzheimer's as a permanent public health priority.
Mandated the update of the National Plan through 2035, requiring inclusion of "healthy aging" and "risk reduction" as federal deliverables, moving the disease from a clinical silo into a permanent CDC-led infrastructure.
Integration of Clinical Endpoints into Reimbursement
In 2025, Medicare coverage for Anti-Amyloid Monoclonal Antibodies expanded to "Coverage with Evidence Development" (CED) utilizing real-world clinical endpoints. Lobbied by USAgainstAlzheimer's and Alliance for Aging Research.
CMS began accepting data from the GUIDE Model as a basis for reimbursement. Clinicians are now paid based on patient-centered outcomes.
Expansion of Mandated Biomarker Coverage
Patient Advocacy Organizations across disease areas advocated for legislation (like HB 0484 and SB 0435) so that state-regulated insurance plans now cover biomarker testing, including blood-based biomarkers.
Directly addresses the "diagnostic paywall." Mandated coverage for blood-based tests (~$500) vs PET scans ($5,000) has effectively democratized access to the clinical pathway for low-income populations.
Decoupling Enrollment from Geographic Barriers
USAgainstAlzheimer's and AIM lobbied for the ENACT Act, whose provisions led to a 15% increase in enrollment of underrepresented populations in Phase III trials during 2025.
Accelerates recruitment by funding decentralized trials. Using "site-less" screening via blood-based biomarkers at community clinics, patients eligible for trial were pre-identified, shortening recruitment timelines by 4 months.
The Alzheimer's Disease Patient Organization Landscape is Broader Than it Appears
Alzheimer's advocacy is no longer shaped solely by organizations with a primary focus on Alzheimer's. An increasing number of Patient Organizations across adjacent disease areas (dementia, aging, cardiovascular health, diabetes, rare neurodegenerative disorders, caregiver support, and brain health) are actively influencing Alzheimer's policy, research priorities, and care pathways.
We developed this report based on Zebricks' structured Patient Advocacy Intelligence platform, which monitors 13,000+ Patient Organizations globally and reviews thousands of advocacy actions weekly.
NSCLC Patient Advocacy Competitive Intelligence
A data-driven analysis of pharma engagement, patient advocacy dynamics, and partnership opportunities in Non-Small Cell Lung Cancer
Introduction
With 50+ approved therapies (7 approvals in 2025 alone), 6 assets awaiting FDA approval in 2026, and 40+ programs in Phase 3, the treatment landscape in NSCLC is becoming increasingly crowded.
In parallel, many patient advocacy groups have established corporate partnerships and increased their differentiation, contributing to a more strategically complex Patient Organization landscape.
This means that companies active in NSCLC should proactively assess these existing relationships to identify gaps, avoid redundancy, and develop differentiated, meaningful engagement strategies.
This analysis is designed to bring more visibility into this complex ecosystem to inspire new insights worth exploring in your Patient Organization engagement strategy.
What you'll discover
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The rise of mutation-specific patient groups
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Where patient advocacy influence is concentrated
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Top 10 pharma leaders in patient engagement globally
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Impactful Pharma <> Patient Organization partnerships we can learn from
Overview of Activity in the Lung Cancer space
Breakdown of genetic mutation type and overall activity volume.
Mutation-Specific Activities (Breakdown)
Key Insight
Patients and Patient Organizations rarely use the term "NSCLC" in their daily vernacular. They either stay broad ("Lung Cancer") to ensure inclusivity or go deep into their specific mutation.
Opportunity
Pharmas can reflect the same language patterns in their communication, referring to either the specific mutation or the symptoms, rather than the histological classification in patient-facing materials.
Overview of Patient Organization Landscape
Distribution of Patient Organizations by industry affiliation and focus.
Patient Orgs with Relevant Disease Focus
ALK+, EGFR+, Lung Neoplasms, Lung Diseases, Asthma, COPD, out of the 390 Patient Orgs active in lung cancer.
Patient Orgs with evident Pharma/Biotech affiliation
Of the 95 Patient Organizations with relevant primary disease focus.
Patient Orgs hold the most relationships
Of the 49 Patient Organizations with evident industry affiliation.
Partnership Insight
While treatments are mature in NSCLC, the Patient Organization industry relationship has significant opportunity. We're seeing hyper-saturation at the top, with 14 Patient Organizations holding relationships with more than 3 pharmaceutical companies.
Opportunity for Pharma
There's white space for the industry to build trust with the 81 Patient Organizations that have seemingly lower industry affiliations. These Patient Organizations could be ripe for capacity building or co-creation that can lead to differentiated and meaningful impact.
Geographic Distribution
Distribution of Lung Diseases, Lung Neoplasms, Asthma, and Obstructive Lung Diseases across 24 countries.
HQ Country Distribution by Primary Disease Focus
Geographic Scope Breakdown
- Global 14 (15.7%)
- Continental 4 (4.5%)
- National 63 (70.8%)
- Local 14 (15.7%)
Disease Distribution
- Lung Neoplasms 71.58%
- Lung Diseases 20.00%
- Asthma 4.21%
- COPD 1.05%
Top 10 Pharma Companies Involved with Lung Cancer Patient Organizations
Ranked by their relative level of involvement based on a weighted score of Volume, Reach & Breadth.
Weighted by Volume, Reach & Breadth
AstraZeneca Ranked #1
Patient Org / Industry Involvement Score Assessment Criteria
Top 10 Patient Organizations with Most Pharma Partnerships
Based on activity and number of industry collaborations in NSCLC/biomarker space.
| Patient Organization Name | Total Activity in Lung Cancer | Activity % specific to NSCLC | Partners | Most Mentioned | Scope |
|---|---|---|---|---|---|
| Lung Cancer Research Foundation | 473 | 9.3% | 18 | AstraZeneca | National |
| Go2 for Lung Cancer | 242 | 7.4% | 18 | Novocure | National |
| American Lung Association | 1,121 | 0.09% | 20 | AstraZeneca | National |
| Caring Ambassadors Lung Cancer Program | 56 | 16.1% | 2 | Roche | National |
| Global Lung Cancer Coalition | 52 | 5.8% | 16 | Merck | Global |
| LUNGevity Foundation | 193 | 8.8% | 13 | AstraZeneca | National |
| Fairlife Lung Cancer and Prevention | 51 | 3.9% | 8 | Pfizer | National |
| EGFR Resisters | 96 | 52.1% | 6 | AstraZeneca | Global |
| ALK Positive | 83 | 21.7% | 6 | AstraZeneca | Global |
| International Association for the study of Lung Cancer | 88 | 13.6% | 10 | AstraZeneca | Global |
Strategic Patient Organization Profile - ALK Positive
Highly Engaged, Not Saturated!
Pharma Names Mentioned
Nuvalent, Pfizer, Roche, Takeda, Amgen, Astellas, AstraZeneca, Genentech, Johnson & Johnson, Sanofi, Merck, Regeneron Pharmaceuticals, 23andMe, Inc.
Types of Activities Involving Industry Partners
Awareness Campaigns: Pfizer, Nuvalent and Takeda sponsored Lung Cancer Awareness Month.
Grants: Partnered with Pfizer to provide a grant encouraging project submissions.
ALK Summit: Annual summit known to accept industry sponsorships.
Clinical Trials: Education about clinical trial participation & updates.
Trial Enrollment: Experimental drug combinations by Janssen, Alternative drug therapy trials by Nuvalent.
Industry Publications: Quantifying patient treatment preferences (Pfizer), Patient QoL (Takeda).
RWE Collaborations: Joined 20 advocacy organizations to launch Lung Cancer Genetics Study (23andMe).
FDA Updates: Sharing FDA decisions and supporting approvals.
Industry Patient Programs: Shared Takeda Copay Program information.
Product Updates: Insights on latest diagnostic tests.
Treatment Options: Comprehensive list of treatment options on their website.
In 2024 ALK Positive disclosed that more than 70% of all it's contributions receivable was from 1 single donor - showing that there's an opportunity for more industry collaboration. As a Patient Organization with a global Scope, ALK shows activities with a wide number of pharma companies and has demonstrated strong capacity to drive meaningful impact through publications, research initiatives, etc.
Strategic Patient Organization Profile - EGFR Resisters
Highly Engaged, Not Saturated!
Pharma Affiliations
AstraZeneca, Johnson & Johnson, 23andMe, Black Diamond Therapeutics, Amgen, Boehringer Ingelheim, Plus Therapeutics, Genentech, Sanofi, Roche, Janssen Biotech, Merck, Regeneron Pharmaceuticals, Blueprint Medicine
Types of Activities Involving Industry Partners
Patient & Caregiver Summit: Annual summit happening in August that may be accepting corporate sponsorships.
Sponsored Trial Updates: Sharing updates on latest trials and LAURA study by AstraZeneca.
Sponsored Trial Webinars: Host webinars where the sponsor has the opportunity to share information about their trials.
Industry Publications: Co-author on J&J's clinical trial result publication.
RWE Collaborations: Joined 20 advocacy organizations to launch the Lung Cancer Genetics Study (23andMe).
FDA Updates: Sharing FDA decisions and supporting approvals.
Providing Quotes in Press Release: Supporting RYBREVANT + LAZCLUZE™ approval.
Webinar About Therapies: Emerging Novel Diagnostic and Therapeutic Approaches with Plus Therapeutics.
EGFR Resisters became an official nonprofit recently, in Jan 2025. As a Patient Organization with global scope, they are heavily involved in research (raised over $1 Million to fund research), and notably, have launched Project PRIORITY. Their known partners are Lungevity Foundation and Lung Cancer Research Foundation, whom they primarily rely on for influencing payers and policy makers.
Mutation-Specific Patient Groups
Patient Organizations with patient communities specific to one (or two) mutation groups in NSCLC.
Patient Organizations Specific to ALK Mutation
- • ALK Fusion
- • ALK Positive
- • ALK Positive Europe
- • ALK Positive UK
- • ALK+ ROS1 Lung Cancer
Patient Organizations Specific to EGFR Mutation
- • EGFR Positive UK
- • EGFR Resisters
Patient Organizations Specific to ROS1 Mutation
- • ROS1 Support Group
- • ALK+ ROS1 Lung Cancer France
- • The ROS1ders
Patient Organizations Specific to RET Mutation
- • RET Positive
- • RET Renegades (part of LUNGevity)
Patient Organizations Specific to Other Mutations
- • BRAF Bombers
- • KRAS Kickers
- • NTRKers
- • MET Crusaders
- • Exon 20
Knowledge and decision-making among people impacted by ALK-positive lung cancer in the UK
ALK Positive UK supported the 9th LUCE Report - Empowering Voices publish by Lung Cancer Europe. This Report includes results obtained from 106 participants impacted by ALK-positive lung cancer in the UK.
Our Response to The National Cancer Plan
EGFR Positive UK emphasizes the importance of the National Cancer Plan for improving outcomes for individuals with EGFR-positive lung cancer. The organization highlights commitments to earlier diagnosis, faster diagnostic pathways, and equitable access to genomic testing and innovative treatments as crucial for enhancing patient care.
FDA Accepts New Drug Application for Zidesamtinib-A Potential New Option for ROS1-Positive NSCLC Patients
The ROS1ders express optimism regarding the FDA's acceptance of the New Drug Application for zidesamtinib, highlighting its potential as a new treatment option for patients with ROS1-positive NSCLC. They emphasize the importance of patient experiences and access to emerging therapies in their mission.
Justin Drake, PhD, Announced as Recipient of RETpositive/LUNGevity Research Award
LUNGevity Foundation, the nation's leading lung cancer-focused nonprofit organization, and RETpositive are honored to announce the recipient of the RETpositive/LUNGevity Translational Research Award for RET-positive Cancer.
Why AML Treatments Don't Always Work- What This Study Reveals About KRAS, NPM1, and Monocytic Resistance
KRAS Kickers shared insights from a study led by Dr. Daniel Pollyea at the University of Colorado Anschutz Medical Campus, published in Blood Cancer Discovery. The research highlights why some acute myeloid leukemia (AML) patients respond differently to the drug combination of venetoclax and hypomethylating agents, identifying key factors such as gene mutations and the maturity of leukemia cells. The findings suggest that personalized treatment approaches based on genetic and phenotypic profiles could improve outcomes, emphasizing the importance of comprehensive biomarker testing and tailored therapies. KRAS Kickers advocates for early testing and treatment personalization, promoting a patient-centered approach to cancer care.
Strategic Pharma & Patient Organization Partnerships
Showcasing impactful collaborations advancing health equity, clinical research, patient support, and real-world-evidence.
AstraZeneca & GO2 for Lung Cancer
SDM Circles ProgramGO2 for Lung Cancer received a grant from AstraZeneca US to implement the SDM Circles program, aiming to enhance lung cancer screening among Black communities. The initiative integrates restorative justice practices into shared decision-making to address disparities driven by systemic racism and medical mistrust through culturally responsive education.
Patient Organization Partner: GO2 for Lung Cancer (CA, US)
Core Focus: Trust Building & Community Empowerment
Pfizer & ALK Positive
Patient Preferences ResearchA new publication highlights the first study in the US to quantify preferences for first-line (1L) treatments for ALK+ advanced NSCLC. Findings reveal different priorities between patients and oncologists regarding trade-offs between treatment benefits and adverse events (AEs), facilitating improved personalized care.
Patient Organization Partner: ALK Positive (GA, US)
Core Focus: Shared Decision-Making Insights
Regeneron & WALCE
"Bridging the gap" ProgramWomen Against Lung Cancer in Europe (WALCE APS) offers free support services assisting cancer patients and families facing financial or logistical challenges in reaching treatment locations. Currently available in Turin, Bari, and Olbia, this initiative is made possible with the critical support of Regeneron Pharmaceuticals.
Patient Organization Partner: Women Against Lung Cancer in Europe (Italy) - WALCE
Core Focus: Financial & Logistical Patient Relief
Hedera DX & WALCE
EMPATHY NSCLC StudyHedera Dx has launched AI-enabled real-world data (RWD) capabilities through a prospective, international, decentralized liquid biopsy utility study. Patient advocacy groups like WALCE play a vital role on the Steering Committee to oversee responsible data use and protect patient privacy.
Patient Organization Partner: Women Against Lung Cancer in Europe (Italy) - WALCE
Core Focus: Responsible Data Use & Privacy Protection
Notable Patient Organization-Led Initiatives
Showcasing independent Patient Organization activities advancing lung cancer care without evident industry support.
GO2 for Lung Cancer
"Lung Cancer Navigation and Care" (Jan 2026) Education/TextbookGroundbreaking open-access textbook providing a comprehensive guide for navigators and allied health professionals. Features evidence-based practices, practical tools, and strategies to address disparities in care, specifically prioritizing equitable access for marginalized communities.
Global Lung Cancer Coalition
Biomarker-Driven Database (Mar 2026) Database/ResourceLaunched a comprehensive online database to support individuals with specific targetable biomarkers (ALK+, EGFR+, BRAF). The tool connects patients, caregivers, and healthcare professionals globally to tailored information and advocacy organizations.
American Lung Association
Free Lung Cancer Screenings (Feb 2026) Screening ProgramOffering free lung cancer screenings to high-risk residents in Southeast Washington. Includes dedicated Lung Health Navigator Support to guide the screening process, secure referrals, manage financial barriers, and organize transportation logistics.
Lung Health Foundation
Lung Cancer Risk Calculator (Feb 2026) Digital ToolIntroduced a user-friendly, self-serve lung cancer risk calculator for Canadians. The tool packages complex risk factors into an intuitive format, helping both individuals and healthcare providers identify if a patient's risk profile justifies further clinical review.
Competitive Insights Can Differentiate Your Advocacy Strategy In A Crowded Market
As NSCLC becomes increasingly segmented by precision therapies, the patient advocacy landscape is evolving alongside it. Broad lung cancer organizations remain influential, but mutation-specific communities are becoming increasingly important voices in research, education, and patient support.
This analysis shows that while some pharma companies have built strong visibility across the Patient Organization ecosystem, meaningful whitespace still exists. The opportunity is not simply to engage more organizations, but to engage meaningfully—with a clear understanding of existing relationships, geographic relevance, and where differentiated partnerships can create the most value.
We hope this analysis gives you a fresh lens for new ways to analyze the advocacy ecosystem by surfacing competitive dynamics, partnership opportunities, and strategic questions worth exploring in your own engagement strategy.