Civic Intelligence

American Association of Kidney Patients Inc

EIN 11-2306416 • 501(c)3 • Tampa, FL

Profile

AAKP is dedicated to improving the lives and long-term outcome of kidney patients. Cont on Sch O.

14422 Bruce B Downs BlvdTampa, FL 33613

www.aakp.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

73rd percentile

0.28x

Higher debt load relative to assets than 73% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Liabilities / Revenue

82nd percentile

0.53x

Higher debt load relative to revenue than 82% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Net Margin

32nd percentile

-2.9%

Higher net margin than 32% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Top Officer Pay

91st percentile

$225,292

Higher top officer pay than 91% of similar nonprofits.

Top officer pay equals 9.2% of source-year revenue.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Asset Growth

54th percentile

4.9%

Faster asset growth than 54% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2024 to 2025

Revenue Growth

25th percentile

-8.6%

Faster revenue growth than 25% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2024 to 2025

Assets

Up

$4,541,577

Up $214,179 (+4.9%) from 2024

Liabilities

Up

$1,278,845

Up $284,519 (+29%) from 2024

Net Assets

Down

$3,262,732

Down $70,340 (-2.1%) from 2024

Revenue

Down

$2,435,680

Down $228,033 (-8.6%) from 2024

Expenses

Up

$2,505,870

Up $705,745 (+39%) from 2024

Net Income

Down

-$70,190

Down $933,778 (-108%) from 2024

Trend Graphs

Balance Sheet Trend

Grouped bars show assets, liabilities, and net assets across loaded filings.

$6.0M$4.0M$2.0M$0-$2.0MAssets 2010: $729,361Liabilities 2010: $70,129Net Assets 2010: $659,2322010Assets 2011: $477,942Liabilities 2011: $104,427Net Assets 2011: $373,5152011Assets 2012: $815,454Liabilities 2012: $125,630Net Assets 2012: $689,8242012Assets 2013: $559,216Liabilities 2013: $372,651Net Assets 2013: $186,5652013Assets 2014: $493,360Liabilities 2014: $317,308Net Assets 2014: $176,0522014Assets 2015: $176,449Liabilities 2015: $74,588Net Assets 2015: $101,8612015Assets 2016: $296,261Liabilities 2016: $184,333Net Assets 2016: $111,9282016Assets 2017: $222,857Liabilities 2017: $203,442Net Assets 2017: $19,4152017Assets 2018: $464,195Liabilities 2018: $474,406Net Assets 2018: -$10,2112018Assets 2020: $748,390Liabilities 2020: $501,539Net Assets 2020: $246,8512020Assets 2021: $1,743,144Liabilities 2021: $715,511Net Assets 2021: $1,027,6332021Assets 2022: $2,636,113Liabilities 2022: $712,787Net Assets 2022: $1,923,3262022Assets 2023: $3,117,129Liabilities 2023: $647,645Net Assets 2023: $2,469,4842023Assets 2024: $4,327,398Liabilities 2024: $994,326Net Assets 2024: $3,333,0722024Assets 2025: $4,541,577Liabilities 2025: $1,278,845Net Assets 2025: $3,262,7322025

Highlighted filing

2025

Assets$4,541,577
Liabilities$1,278,845
Net Assets$3,262,732

Operations Trend

Revenue, expenses, and net income by year, with the latest filing highlighted.

$3.0M$2.0M$1.0M$0-$1.0MExpenses 2010: $862,2652010Expenses 2011: $1,015,2032011Revenue 2012: $1,289,681Expenses 2012: $973,372Net Income 2012: $316,3092012Revenue 2013: $625,963Expenses 2013: $844,114Net Income 2013: -$218,1512013Revenue 2014: $710,588Expenses 2014: $700,409Net Income 2014: $10,1792014Revenue 2015: $663,192Expenses 2015: $737,383Net Income 2015: -$74,1912015Revenue 2016: $793,302Expenses 2016: $783,235Net Income 2016: $10,0672016Revenue 2017: $1,009,945Expenses 2017: $1,102,458Net Income 2017: -$92,5132017Revenue 2018: $930,136Expenses 2018: $932,262Net Income 2018: -$2,1262018Revenue 2020: $1,353,259Expenses 2020: $1,329,065Net Income 2020: $24,1942020Revenue 2021: $2,054,593Expenses 2021: $1,273,811Net Income 2021: $780,7822021Revenue 2022: $2,472,938Expenses 2022: $1,577,245Net Income 2022: $895,6932022Revenue 2023: $2,678,191Expenses 2023: $2,132,033Net Income 2023: $546,1582023Revenue 2024: $2,663,713Expenses 2024: $1,800,125Net Income 2024: $863,5882024Revenue 2025: $2,435,680Expenses 2025: $2,505,870Net Income 2025: -$70,1902025

Highlighted filing

2025

Revenue$2,435,680
Expenses$2,505,870
Net Income-$70,190

Filings

Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.54$1.28$3.26$2.44$2.51$0.07
2024Detailed filing. Detailed filing data is available for this year.$4.33$0.99$3.33$2.66$1.80$0.86
2023Detailed filing. Detailed filing data is available for this year.$3.12$0.65$2.47$2.68$2.13$0.55
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.64$0.71$1.92$2.47$1.58$0.90
2021Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.74$0.72$1.03$2.05$1.27$0.78
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.75$0.50$0.25$1.35$1.33$0.02
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.46$0.47$0.01$0.93$0.93$0.00
2017XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.22$0.20$0.02$1.01$1.10$0.09
2016Summary only. Only limited summary data is available for this year.$0.30$0.18$0.11$0.79$0.78$0.01
2015XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.18$0.07$0.10$0.66$0.74$0.07
2014Import issue. A filing source exists for this year, but detailed import did not complete cleanly.$0.49$0.32$0.18$0.71$0.70$0.01
2013Summary only. Only limited summary data is available for this year.$0.56$0.37$0.19$0.63$0.84$0.22
2012Summary only. Only limited summary data is available for this year.$0.82$0.13$0.69$1.29$0.97$0.32
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.48$0.10$0.37$1.02
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.73$0.07$0.66$0.86
Latest Detailed Filing

The latest 2025 filing currently has linked XML that has not been fully parsed yet. Showing the latest detailed filing from 2024 below.

Jump To
Filing Snapshot
Filing Period
Jul 1, 2023 to Jun 30, 2024
Signed
Dec 10, 2024
Return Version
2023v5.1
Gross Receipts
$2,671,860
Mission and Program Overview

Mission

Dedicated to improving

AAKP is dedicated to improving the lives and long-term outcome of kidney patients. Cont on Sch O.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$2,734,808$3,927,960▲ $1,193,152
Accounts Receivable$199,960$175,127▼ $24,833
Prepaid Expenses and Deferred Charges$31,549$95,357▲ $63,808
Inventories for Sale or Use$55,327$81,186▲ $25,859
Land, Buildings, and Equipment, Net$9,332$4,758▼ $4,574
Total Assets$3,117,129$4,327,398▲ $1,210,269
Other Assets Total$86,153$43,010▼ $43,143
Liabilities
Deferred Revenue$455,222$885,342▲ $430,120
Accounts Payable and Accrued Expenses$107,109$65,548▼ $41,561
Other Liabilities$85,314$43,436▼ $41,878
Total Liabilities$647,645$994,326▲ $346,681
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$2,329,097$3,205,916▲ $876,819
Net Assets With Donor Restrictions$140,387$127,156▼ $13,231
Total Net Assets Fund Balance$2,469,484$3,333,072▲ $863,588
Total Liabilities and Net Assets / Fund Balance$3,117,129$4,327,398▲ $1,210,269

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$4,758$48,225$52,983
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Diana ClynesExecutive DirectorFT$156,875$52,773$209,648
Erin KahleDeputy DirectorFT$122,500-$122,500
Jerome BaileyDirector of Patient EngagementFT$110,000-$110,000

Board Members and Trustees

NameTitle
Richard KnightPast President
Edward V Hickey IIIPresident
Jennifer L JonesVice President
Barry H Smith MD PhDBoard Member
Catherine Campbell DNP RN MBABoard Member
Christine A HernandezBoard Member
David RodriquezBoard Member
Gitthaline A GagneBoard Member
James W Myers IIIBoard Member
Janice Lea MD MSC FASNBoard Member
Kent Bressler MA RNBoard Member
Lana Schmidt MBABoard Member
Paul T ConwayBoard Member
Sara E Schaeffer MBA MA RDBoard Member
Dale RogersSecretary
Suzanne RuffTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Briar Patch MediaAudio and video production8054 Andiron Lane, Jessup, MD 20794$177,891
Revenue and Support

Revenue Composition

Contributions and Grants
$2,176,627
Program Service Revenue
$408,656
Investment Income
$77,872
Other Revenue
$558
All Other Contributions
$1,554,317
Change in Net Assets
$863,588

Audited Revenue Reconciliation

Revenue per Audited Statements
$2,663,713
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$3,321
Total Revenue per Audited Statements
$2,667,034
Total Revenue per Form 990
$2,663,713
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$898,979
Other Expenses$888,624
Total Fundraising Expense$50,730
Grants and Similar Amounts Paid$12,522
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Current Officers, Directors, Trustees, and Key Employees$320,386$111,243$10,519$442,148
Other Salaries and Wages$245,644$85,292$8,065$339,001
Advertising$150,521$512-$151,033
Travel$97,114$24$300$97,438
Fees for Services Other$53,043$35,579-$88,622
Other Employee Benefits$43,390$15,066$1,425$59,881
Payroll Taxes$32,124$24,773$1,052$57,949
Fees for Services Accounting$29,700$19,800-$49,500
Occupancy$30,635$10,637$1,006$42,278
Other Expenses$18,526$11,252$26$29,804
All Other Expenses$4,977$7,674$14,058$26,709
Grants to Domestic Individuals$12,522--$12,522
Depreciation Depletion$3,314$1,151$109$4,574
Insurance-$2,730-$2,730
Fees for Services Legal-$50$550$600
Total Functional Expenses$1,406,688$342,707$50,730$1,800,125

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$1,803,446
Expenses per Audited Statements$1,800,125
Total Expenses per Form 990$1,800,125
Expenses Not Reported on Form 990$3,321
Expenses Not Reported on Financial Statements$0
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$8,147
Fundraising Gross Income$4,337
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Medal of Excellance$7,500-$6,255-
Annual Walk for Fun$10,162$4,337$1,892$2,445
Total Events$17,662$4,337$8,147$-3,810
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Current portion of lease liabilities$43,436
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, line 11B

The Form 990 is reviewed in detail by the Finance Committee. The Finance Committee approves the return. Copies of the Form 990 are provided to all Board members prior to the return being filed.

Form 990, Part VI, Section B, line 12C

All members of the Board of Directors and employees of AAKP receive a copy of the conflict of interest policy. The Executive Director and all Board members are required to complete and sign the Conflict of Interest Questionnaire and Confidentiality Agreement indicating that they have been and are in compliance with this policy.

Form 990, Part VI, Section B, line 15A

The President conducts an annual review of the Executive Director's performance and recommends any adjustment to salary to the Executive Committee. The Executive Committee approves raises for the Executive Director.

Form 990, Part VI, Section C, line 18

The Form 990 is reviewed in detail by the Executive Director, Director of Office Operations, Contract CFO, and Officers. The Officers are responsible for final approval of the return. Copies of the Form 990 are provided to all Board members prior to the return being filed. The Final 990 and Audit is made available on the organization's website.

Form 990, Part VI, Section C, line 19

The Final 990 and Audit is made available on the organization website.

Filing and Contact Details

Filer

Filer Name
American Association of Kidney Patients
EIN
11-2306416
Phone
8136368100
Address
14440 Bruce B Downs Blvd, Tampa, FL 33613

Signing Officer

Name
Diana Clynes
Title
Executive Director
Phone
8136368100
Signed
2024-12-10
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Diana Clynes
Formed
1969
Legal Domicile
Fl
Voting Board Members
14
Independent Board Members
14
Employees
7
Volunteers
200

Preparer

Firm
Pdr Cpas Advisors Inc
Address
4023 Tampa Road Suite 2000, Oldsmar, FL 34677
Preparer
Mary Brown
Phone
7277854447
Supplemental Narrative

Additional Explanations

Form 990, Part I, Line 1

The American Association of Kidney Patients (AAKP) is the oldest and largest fully independent kidney patient organization in the U.S.A. Founded in 1969 by six dialysis patients, with doctor encouragement, our Founders helped create the End Stage Renal Disease (ESRD) program, saving over one million lives since 1973. Our skilled Patient Members, Board of Directors, and Patient Ambassadors serve as advocates in Washington, D.C., and via the organization's online advocacy Action Center, so AAKP never uses professional lobbyists as substitutes for the independent patient voice. Mission: AAKP is dedicated to improving the lives and long-term outcomes of kidney patients through education, advocacy, patient engagement, and the fostering of patient communities. Vision: AAKP fights for early disease detection and the appropriate diagnosis of rare/genetic conditions; increased kidney transplantation and pre-emptive transplantation; full patient choice of either in-center or home dialysis; protection of the patient/physician relationship; promotion of research and innovation including artificial implantable and wearable kidneys and xenotransplantation; and the elimination of barriers for patient access to available treatment options. For over 50 years, AAKP has been driving policy discussions on kidney patient care choice and medical innovation. Over the past decade, AAKP patient advocates have helped advance the passage of the bipartisan law modernizing the Organ Procurement and Transplant Network (OPTN) via greater competition and oversight (2023); lifetime transplant drug coverage for kidney transplant recipients (2020); the presidential Executive Order on Advancing American Kidney Health (2019); new job protections for living organ donors under the Family Medical Leave Act (FMLA) via the U.S. Department of Labor (2018); and Congressional legislation allowing HIV-positive organ transplants for HIV-positive patients (2013). AAKP has long highlighted kidney disease as both a healthcare issue and a workforce issue of national importance. Through education, advocacy, and allied partnerships, AAKP continues to address the needs of the WHOLE person impacted by kidney disease, including the need to work part-time or full-time in a career, job, or trade of their choice so they have the means to pursue their independence, life goals, and aspirations. AAKP represents kidney patients across the full disease spectrum, from individuals at-risk, to early-stage chronic kidney disease (CKD), to those experiencing end stage kidney failure (ESKD), and transplant patients. We are proud of the fact that patients, care partners, organ donors, and allied professionals have helped AAKP build the largest patient consumer and care partner base in the kidney community. Each day, AAKP works diligently to help protect and extend the lives of kidney patients across the country, reaching over one million individuals annually. Viewership for 2024 AAKP signature events and patient education programs exceed 100,000 people across 100 countries and is growing rapidly. International and national program faculty has included a combined 121 medical practitioners, researchers, and patient experts. Since 1969, AAKP has been a patient-led organization driving policy discussions on kidney patient care choice and medical innovation. In 2017, AAKP launched its Veterans Health Initiative to advance research, innovation, and policies aimed at safeguarding the highest standards in kidney care and treatment for veterans managing kidney disease both inside and outside the VA medical system. In 2018, AAKP established the first and largest U.S. kidney voter registration program, KidneyVoters. In 2019 AAKP stood up AAKP Global which expanded the organizations reach internationally. In 2022 AAKP launched its Patient Voice Patient Choice initiative which provides an interactive platform patients and care partners can use to quickly identify current issues impacting care choice and treat

Program Service Accomplishments Line 4A: AAKP Center for Patient Engagement

to care options for individuals affected by kidney diseases. AAKP fundamentally understands that kidney disease and the health and treatment of kidney patients pose a significant impact on the American taxpayer and the national economy. The cost of kidney disease alone invites constant and intense interest and concern within the Federal government and the U.S. Congress. The costs associated with the disease have spurred multiple Federal initiatives in the past several years designed to increase positive patient outcomes, reduce spending, and increase efficiencies. The move by the Federal government to examine and re-examine many of the cost-drivers within healthcare spending, and specifically within the ESRD program, represents a key reason why AAKP is working aggressively to build our capacities to raise the independent patient voice throughout the Federal policy-making process. In order for AAKP to maintain our leadership in protecting patient interests, and the overlapping interests among allies throughout the broader kidney community including the pharmaceutical industry and providers, we intend to grow our membership numbers, advance our National AAKP Ambassador Initiative, expand our reach internationally and equip kidney patients across the globe with proven and cost-effective training and technologies that make an impact on the policy process. The Center for Patient Engagement and Advocacy was created to leverage AAKP's increased profile and influence in the national public policy process and to expedite implementation of our national strategy to vastly expand patient involvement in the decisions impacting their health outcomes. The AAKP Center for Patient Engagement and Advocacy was created in 2014 to leverage AAKP's increased profile and influence in the national public policy process and to expedite implementation of our National Strategy to vastly expand patient involvement in the decisions that impact their health outcomes. The Center for Patient Engagement and Advocacy brings, under one focused area, all AAKP efforts to build patient and family/caregiver membership in AAKP as well as their participation in existing and emerging AAKP patient health engagement and advocacy programs. At the heart of this Center is the AAKP Ambassador Initiative, launched in 2017, the program has grown to more than 170 + Ambassadors across the U.S. In 2019, AAKP launched the AAKP Global, the global arm of this initiative, and now has Global Ambassadors in countries such as Ireland, Canada, Argentina, United Arab Emirates, Puerto Rico, and many more. Ambassadors are AAKP's most engaged volunteers who utilize their personal experiences and professional skills to contribute to both the AAKP mission and the larger kidney community based on their desire to serve a cause larger than themselves. These individuals also allow AAKP to expand our reach and resources to make a positive impact at the state and local level and globally. Major programs, initiatives, and campaigns within this Center also include The Decade of the Kidney, the Annual Global Summit on Kidney Innovation, the Annual Public Policy Summit, the AAKP Action Center - which includes the AAKP KidneyVoter voter registration campaign and the AAKP Patient Voice Patient Choice initiative. Additionally, as part of the AAKP National Strategy, the Center for Patient Engagement and Advocacy works to engage, train, certify and deploy kidney patients in ways that are the most effective at elevating the patient voice within Federal policy-making circles. This includes critical times when national legislation, health program implementation, regulations or potential delays in the pharmaceutical approval process pose a concern to patient access to quality care or their future healthcare outcomes. AAKP is engaging and encouraging kidney patients and caregivers to participate in substantive opportunities for effective patient engagement and advocacy. To date, AAKP has developed and makes avail

Program Service Accomplishments Line 4C: Patient Information and Education

National Public Service Award Presented to a public servant whose body of professional work and commitment to advance the interests and well-being of the Nation's kidney patient population through policy, education and activism. Past awardees include Dr. Carolyn Neuland, the U.S. Food and Drug Administration; Dr. Priti Patel, Centers for Disease Control and Prevention; Dr. Robert Star, National Institute of Health; and Elena Balovlenkov, MS, RN, CHH, Centers for Medicare and Medicaid Services; and Dr. Paul Kimmel, National Institute of Health. Medal of Excellence The AAKP Medal of Excellence honors health care professionals who have made significant contributions to the advancement and evolution of direct patient care; encouraged the expansion of the patient engagement model within the renal community; and enhanced the quality of life for kidney patients and their families. The 2024 Medal of Excellence recipients are recognized throughout the calendar year. The 2024 Medal of Excellence Award recipients: Special Recognition: N/A Nephrologist/Physician Category: Barry H. Smith, MD, PhD Transplant Surgeon Category: A. Osama Gaber, MD, FACS, FAST and Steven Potter, MD, FACS Transplant Professional Category: Kenneth A. Newell, MD, PhD and Roslyn B. Mannon, MD, FASN Nursing Category: Anita K. Sites, MSN, RN, AG-ACNP-BC, CCTC Dietetic Category: Michelle Cook, RD, CSR, LD Dialysis Technician Category: Ryan White, CCHT Social Worker Category: Sharyn Kreitzer, MSW Presidential Volunteer Service Awards AAKP is a PVSA-authorized and certifying organization and the largest organization in the kidney space that participates in this important American initiative. In 2020, AAKP launched its inaugural PVSA program, and twenty-nine kidney advocates received recognition from President Donald J. Trump for their work to educate high-risk immunosuppressed and immunocompromised kidney patients on threats posed by COVID-19. The PVSA was founded by President George W. Bush in the aftermath of the terror attacks of September 11, 2001, as one of several initiatives, including the President's Council on Service and Civic Participation, designed to encourage and exemplify the strength of outstanding American volunteerism and community engagement. The award program has continued under successive presidential administrations. The PVSA program is led by AmeriCorps (formerly the Corporation for National and Community Service), an organization whose vision originated in the administration of President William J. Clinton, and is managed in partnership with Points of Light, an organization whose vision is rooted in the administration of President George H.W. Bush. In 2022, President Joseph R. Biden recognized a number of AAKP patients and advocates with a U.S. PVSA. Six AAKP leaders received the President's Lifetime Achievement Award, the highest level of recognition that is unique and recognizes an exemplary level of volunteerism to build a stronger nation through volunteer service, including the investment of thousands of hours of personal time and professional expertise. The AAKP members who received the Presidential Lifetime Achievement Award, as well as PVSA awards at the gold, silver, and bronze levels, are nationally known advocates deeply involved in efforts to impact kidney science, innovation, and policy through collaborations with top kidney scientists, elected and appointed leaders, federal agencies, investors, major companies and startups, and nearly every major academic research center and university involved in kidney research. President's Lifetime Achievement Award: " Richard Knight (MD), former dialysis patient,16-year transplant recipient; AAKP President; Member, National Institutes of Health/NIDDK Strategic Planning Committee; Co-Chair, Community Engagement Committee, NIH/NIDDK Kidney Precision Medicine Project; Member, Scientific Registry of Transplant Recipients (SRTR) Visiting Committee; 2017 recipient, American Society of Nephrology's Pres

Program Service Accomplishments Line 4C: Patient Information and Education

PVSA Silver Medal: " Melissa Bensouda (TX), former transplant recipient, current home hemodialysis patient; AAKP National Ambassador; 2020 PVSA recipient " Dr. Muralidharan Jagadeesan (DC), Associate Professor of Medicine, the Division of Renal Diseases and Hypertension and Chairman of Transplant Medicine; Medical Director, Kidney-Pancreas Transplant Program at the George Washington School of Medicine and Health Sciences; Faculty and Planning Committee Member, AAKP/GWU Global Summit on Kidney Innovations; 2020 PVSA recipient " Katina Lang-Lindsey, PhD, LMSW (AL), former dialysis patient, current transplant recipient; Assistant Professor, A&M University; AAKP National Ambassador; 2020 recipient, AAKP Patient Safety Award; 2020 PVSA recipient " Dammeon Marshall, MSW (GA), MSW; kidney disease patient; self-employed/entrepreneur; AAKP National Ambassador; 2020 PVSA recipient " James Myers (IN), former dialysis patient, current transplant recipient; AAKP National Board of Director and National Ambassador; Chair, AAKP Strategic Communications Committee; Chair, AAKP Pediatric Kidney Pals Initiative; 2015 recipient, Inaugural AAKP National Social Media Education and Advocacy Award; 2020 PVSA recipient " Sharron Rouse (MD), former dialysis patient, current transplant recipient; AAKP National Ambassador; Founder, Kindness for Kidneys International; 2020 recipient, AAKP Support Group of the Year Award; Co-Chair, 2020 AAKP National Patient Meeting; AAKP Peer Mentor; 2020 PVSA recipient " Lana Schmidt, MBA (IL), former home hemodialysis patient, current transplant recipient; AAKP National Board of Director and National Ambassador; Member, AAKP Strategic Communications Committee; 2020 PVSA recipient PVSA Bronze Medal: " Catherine Campbell, DNP, RN, MBA, CHC, CCM, FACHE (TX), pre-emptive transplant recipient; AAKP National Board of Director and National Ambassador; Member, the Patient Engagement and Return of Results Committee and Community Advisory Board Committee for the National Institutes of Health Kidney Precision Medicine Project; Working Group Member, International T Cell-Mediated Rejection Project " Sara Eve Schaeffer, MBA, MA, RD (FL), AAKP National Board of Director; VP, Strategic Operations, Healthmap Solutions; former Executive Director, the Centers for Medicare and Medicaid Services' kidney contracts for Health Services Advisory Group " Shameka Ausborn (FL), former transplant recipient, current home hemodialysis patient; AAKP National Ambassador; AAKP Peer Mentor " Gitthaline "Candie" Gagne (PA), former dialysis patient, current transplant recipient; AAKP National Ambassador; Retired Navy Hospital Corpsman; Certified Surgical Technologist " Christine Hernandez, RN, BSN (IL), registered nurse, current in-center hemodialysis patient; AAKP National Ambassador " Terry Litchfield (WI), former caregiver to husband who was a long-term dialysis patient; AAKP National Ambassador " Roberta "Bobbie" Reed (PA), caregiver to son who is a transplant recipient; AAKP National Ambassador " Cecilia Santana (NY), former dialysis patient, current transplant recipient; AAKP National Ambassador; AAKP Peer Mentor; Wellness Ambassador, The Rogosin Institute " Mihi Wickramasinghe (CA), former transplant recipient, current peritoneal dialysis patient; AAKP National Ambassador " Leigh-Ann Williams (LA), current home hemodialysis patient; AAKP National Ambassador

Program Service Accomplishments Line 4D

AAKP Center for Patient Research and Education AAKP firmly believes, as research has also shown, that patient and family member/caregiver education is an integral part of treatment and enhancing quality of life. Not educating a patient and their care partner about their condition and treatment options leaves the patient at risk for complications as well as the possibility of not selecting a course of treatment best suited for them. Education is a simple and effective way to improve overall health and achieve better outcomes. In the same vein, AAKP is uniquely positioned to ensure the patient has a central role in research and other activities that are designed to determine optimal approaches and strategies for providing healthcare services, assistance programs, access to new products and services, etc. AAKP constituents represent all ages, modalities, ethnicities, disease states, and a variety of demographic indicators. AAKP's research capabilities have grown rapidly, and the Association has created a sophisticated database and expansive social media channels which allow AAKP to better connect and learn from its constituents. In turn, AAKP provides education to patients and caregivers on what it means to be involved in research initiatives as well as opportunities to get involved. From online surveys, interviews, focus groups, and clinical trial awareness campaigns - AAKP is focused on inserting important patient insight and preferences into research to help inform innovation, advance care and make a meaningful impact to improve lives - this means AAKP members are helping shape the future policies and discoveries that characterize kidney care! AAKP is known within the renal community as a leader in quality education; taking time to produce programs and materials that are current, relevant and address the most pressing issues patients and their families face. AAKP is deliberate in its development of educational programs, working closely with its Medical Advisory Board, health educators and fellow patients to create unbiased, reliable resources that are easily understood and beneficial to patients. AAKP routinely uses matrices to measure program outcomes to assess effectiveness and success as well as opportunities for enhancement. AAKP offers its programs in a variety of mediums to ensure we reach as many patients as possible (print, online/web-based, smart devices, live/in-person). Research and Engagement: As a leading voice in the patient community, AAKP is uniquely positioned to assist companies interested in understanding the patient experience by connecting them directly to the thousands of patients, family members and caregivers in our database. AAKP's propriety database and engaged community of patients, creates a valuable resource to companies targeting the kidney patient population for market research and/or raising awareness on clinical trial opportunities. AAKP National Patient Meeting: The AAKP National Patient Meeting is the largest gathering of kidney patients and their care-partners in the U.S. The 2024 National Patient Meeting was held as a hybrid event. The in-person portion was held in Orlando, FL and the virtual component was enabled using AAKP's sophisticated virtual event platform. This event engaged a national global audience. The sophisticated platform AAKP used for the meeting allowed registrants to view general and breakout sessions; engage with speakers and fellow attendees; participate in a virtual exhibit hall and engage with vendor representatives in real-time; join virtual focus groups; and much more. The in-person component included the same interactive experiences, events, and networking opportunities. AAKP featured several distinguished panelists and speakers, including but not limited to renowned healthcare professionals, researchers, patient experts, industry partners, and government agency representatives. All sessions are available post-event, OnDemand, for enduring education. AAKP is committ

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team to better understand/manage conditions. " AAKP Pocket Guide to Managing Kidney Disease: This Pocket Guide is a tool to help patients and caregivers have more effective dialogue with their healthcare teams. It includes 5 Key Questions to Ask your Doctor/Medical Specialist, as well as additional questions for each stage of Chronic Kidney Disease. " AAKP Pocket Guide to Managing High Potassium: The Pocket Guide is a tool to help kidney patients and caregivers have more effective dialogue with their healthcare teams about the risks associated with high potassium levels and the best way to manage it. " AAKP Pocket Guide to Managing Chronic Kidney Disease Associated Pruritus: The Pocket Guide is a tool to help kidney patients and caregivers have more effective dialogue with their healthcare teams about Chronic Kidney Disease Associated Pruritus (CKD-aP), moderate to severe itching associated with dialysis, and the best way to manage it. " Understanding the Food Nutrition Label: The Pocket Guide is a tool to help kidney patients and caregivers have a better understanding of how to read and understand food nutrition labels to support kidney-friendly eating. " Conversation Starter: Questions to Ask Your Healthcare Team About Changing Dialysis Therapies " Conversation Starter: Questions to Ask Your Healthcare Team About Choosing the Right Therapy for You! Coping, Living, and Thriving with Kidney Disease: The purpose of this booklet is to empower individuals to take charge of their disease management by confronting negative feelings and providing strategies on how you and your team can thrive and become the warrior you want to be on this journey of kidney disease. "Understanding" Series: This workbook series covers a variety of important topics such as: Hemodialysis Options, Access Options, PD Options, Home Hemodialysis, Anemia, Iron, Depression, Fabry Disease, Hepatitis C, Kidney Transplantation, Gout, Kidney Stones, and Proteinuria. All brochures are available in print and online pdf. Kidney Beginnings: This workbook introduces chronic kidney disease and is designed for individuals recently diagnosed or with risk factors such as diabetes and hypertension. The various chapters address common topics for individuals with or at-risk for kidney disease such as: diabetes, hypertension, common medical test, common medications, emotional issues, diet/nutrition, exercise, employment and much more. Patient Plan Series: These four phased workbook series are designed to provide individuals with the information they need as they progress through kidney disease. The information is divided among the four books to allow a patient to advance when they are ready and learn information in a manageable way that allows for the greatest impact on behavioral changes. aakpRENALIFE: aakpRENALIFE is the official flagship magazine of the Association. Produced bi-monthly, the articles and information are educational in nature and designed to be relevant for patients regardless of stage of kidney disease or modality option. Content is made available online as well so that patients and caregivers have access to specialty articles at any time post-production. E-newsletters: are distributed monthly and cover current news and issues for individuals with chronic kidney disease, regardless of stage or modality. Cystinosis Patient Education and Activity Scholarship Program: While a variety of factors may cause an individual to be diagnosed with kidney disease, genetic and rare causes can be especially difficult for patients and family members to manage. Understanding the need to support individuals who have kidney diseases caused by a genetic or rare condition, AAKP has expanded its education, advocacy efforts and services to those affected. In support of AAKP's Pediatric and Rare Disease Initiatives, AAKP launched its Cystinosis Patient Education and Activity Scholarship Program for those affected with cystinosis in 2019. The objective of the scholarship program is

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impact on the policy process. The Center for Patient Engagement and Advocacy was created to leverage AAKP's increased profile and influence in the national public policy process and to expedite implementation of our national strategy to vastly expand patient involvement in the decisions impacting their health outcomes. The AAKP Center for Patient Engagement and Advocacy was created in 2014 to leverage AAKP's increased profile and influence in the national public policy process and to expedite implementation of our National Strategy to vastly expand patient involvement in the decisions that impact their health outcomes. The Center for Patient Engagement and Advocacy brings, under one focused area, all AAKP efforts to build patient and family/caregiver membership in AAKP as well as their participation in existing and emerging AAKP patient health engagement and advocacy programs. At the heart of this Center is the AAKP Ambassador Initiative, launched in 2017, the program has grown to more than 160 + Ambassadors in nearly all 50 states plus D.C. In 2019, AAKP launched the Global arm of this initiative and now has Global Ambassadors in countries such as Ireland, Canada, Argentina, United Arab Emirates and Puerto Rico. Ambassadors are AAKP's most engaged volunteers who utilize their personal experiences and professional skills to contribute to both the AAKP mission and the larger kidney community based on their desire to serve a cause larger than themselves. These individuals also allow AAKP to expand our reach and resources to make a positive impact at the state and local level and globally. Since 2018, AAKP has conducted the largest virtual kidney voter registration drive in America, the "I am a Kidney Voter" campaign, which has registered patients in every state. #IAmAKidneyVoter, #KidneyVoter. Major programs within this Center include the Decade of the Kidney, the Global Summit on Kidney Innovation, the Public Policy Summit, and the Ambassador Initiative. Additionally, as part of the AAKP National Strategy, the Center for Patient Engagement and Advocacy works to engage, train, certify and deploy kidney patients in ways that are the most effective at elevating the patient voice within Federal policy-making circles. This includes critical times when national legislation, health program implementation, regulations or potential delays in the pharmaceutical approval process pose a concern to patient access to quality care or their future healthcare outcomes. AAKP is engaging and encouraging kidney patients and caregivers to participate in substantive opportunities for effective patient engagement and advocacy. AAKP operates via key distinctives and principles: 1. Elevate patient voice in national issues and across drug, diagnostic and device development 2. Protect the unique relationship between patients and their doctors 3. Educate patients and preserve their access to choices as informed consumers of healthcare 4. Maintain full independence in all national policy and decisions - never surrender your letterhead 5. Honor the principle of "no surprises" among trusted allies and Federal government officials AAKP has a history of advocating on important issues affecting patients' care, treatment, options, medications and such. The Advocacy Program helps support initiatives such as: Capitol Hill Day visits, participation in meetings/seminars/conventions, public policy, Communication, research issues affecting patients and practical tools that explain how to be more effective advocates. The Decade of the Kidney The Decade of the Kidney is a transformative announcement AAKP made in June of 2019 at its 2nd Annual National Policy Summit in Washington, D.C. designed to unite the community around a central thought - or a "big idea." From 2020-2030, during the Decade of the Kidney, we will see even greater contributions from every sector of our society and every discipline. These include medicine, science, academia, electedofficials, industry,

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new research and innovations in the realms of biologics, diagnostics, and devices. In 2023, the AAKP announced a formal partnership with the Veterans Health Administration (VHA) Kidney Disease Program. Capitol Hill Day Visits: These educational visits, hosted in-person and virtually in 2023-24, engage patients, care partners and healthcare professionals with their legislative representatives and staff to discuss current policy issues that affect patient care and quality of life. Participants are provided training on how to conduct respectful and substantive meetings before ever visiting Capitol Hill. AAKP also partners with medical professional organizations when policy issues related to patient services overlap with our strategic issue agenda. These organizations include, but are not limited to the following: " Alliance for Home Dialysis " Alport Syndrome Foundation " American Kidney Fund " American Society of Nephrology " American Society of Pediatric Nephrology " American Society of Transplantation " American Society of Transplant Surgeons " Kidney Community Hill Day (a collaborative effort of over twelve national organizations) " Kidney Health Initiative " Medical Education Institute " National Kidney Foundation " National Renal Administrators Association " PKD Foundation " Renal Physicians Association " TransplantFirst Academy, and more. Contact AAKP for a full list of partners. In 2023-24, AAKP has conducted over 600 Hill visits, independently and jointly with key allied organizations. AAKP's Ambassador Initiative: The AAKP Ambassador Initiative is part of our Center for Patient Engagement and Advocacy. Ambassadors are our most engaged volunteers - seasoned experts on kidney disease, dialysis, transplant, and living kidney donation. Ambassadors utilize their personal experiences and professional skills to contribute to both the AAKP mission and the larger kidney community based on their desire to serve a cause larger than themselves. AAKP helps provide Federal officials with the patient input they seek, through our Ambassadors' engagement. Ambassadors maintain relationships and communications with their elected leaders to be sure kidney disease is on their radar. They participate in focus groups, roundtables, Technical Evaluation Panels (TEPs), surveys, clinical trials, public testimony before Federal agencies, and more. Throughout 2021-22, AAKP expanded this initiative to include International Ambassadors from countries including, but not limited to: Argentina, United Kingdom, Ireland, United Arab Emirates, Germany, and Canada. AAKP Policy Summit: AAKP is a nationally recognized leader in patient education and advocacy and our independent insights are highly regarded and relied upon by government agencies, elected and appointed national policymakers and policy influencers. With 50 years of effective patient engagement experience, AAKP knows that patients, government, researchers, professionals and industry working collaboratively together is the fastest way to transplant new innovations in kidney care into care solutions that impact patient health outcomes. The Policy Summit brings together key influencers from across all sectors of the policy spectrum for a two-day Summit that addresses the current state of kidney care at the crossroads of innovation, regulation, and payment. AAKP Policy Roundtable: AAKP Policy Roundtables focus on timely and critical issues impacting kidney care. Strategic Partnerships and Alliances: AAKP has maintained our national reputation as a trusted and independent voice for patients by both maintain our independence and through a select and targeted series of collaborative relationships with other non-profit professional and patient organizations. Before AAKP collaborates with any organization, we pose several questions to assess their credibility in our order to protect our organization and the patient interests we represent. These questions include: 1. Will our association with this organiza

Financial Statement Notes

Part X, Line 2:

The Organization accounts for the effect of any uncertain tax positions based on a "more likely than not" threshold to the recognition of the tax positions being sustained based on the technical merits of the position under scrutiny by the applicable taxing authority. If a tax position or positions are deemed to result in uncertainties of those positions, the unrecognized tax benefit is estimated based on a "cumulative probability assessment" that aggregates the estimated tax liability for all uncertain tax positions. The Organization has identified its tax status as a tax-exempt entity as its only significant tax position; however, the Organization has determined that such tax position does not result in an uncertainty requiring recognition. The Organization is not currently under examination by any taxing jurisdiction. The Organization's federal returns are generally open for examination for three years following the date filed.

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IRS990/ProgSrvcAccomActy2Grp/Desc0Patient ServicesAAKP is dedicated to improving the lives and long-term outcome of kidney patients through education, advocacy, patient engagement and the fostering of patient communities. AAKP fights for early disease detection and appropriate diagnosis of rare/genetic conditions; increased kidney transplantation and pre-emptive transplantation; full patient choice of either in-center or home dialysis; protection of the patient/physician relationship; promotion of research and innovation including artificial wearable and implantable kidneys and xenotransplantation; and the elimination of barriers for patient access to available treatment options. At AAKP, we1. Educate: patients & caregivers on important issues so patients can better understand their condition and make informed decisions on their care options which align with their life's goals and aspirations. AAKP is a recognized leader for patient-centered education - continually developing high quality, professionally written, edited and reviewed material.2. Advocate: for policies that improve treatment and extend life for kidney disease patients - always defending patient choice. AAKP has been the independent patient voice - advocating for improved access to high-quality healthcare through regulatory and legislative reform at the Federal level. The Association's work has improved long-term outcomes in both quality of health and the ability for patients and family members affected by kidney diseases to lead a more productive and meaningful life.3. Define: "patient engagement" as a substantive tool to impact policy & health outcomes.4. Community: AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients' everyday lives.AAKP operates via key distinctives and principles: 1. Elevate patient voice in national issues and across drug, diagnostic and device development2. Protect the unique relationship between patients and their doctors3. Educate patients and preserve their access to choices as informed consumers of healthcare4. Maintain full independence in all national policy and decisions - never surrender your letterhead5. Honor the principle of "no surprises" among trusted allies and Federal government officials AAKP services kidney patients across the disease spectrum, including those with risk factors for kidney diseases, individuals with early-stage kidney disease to individuals with end stage kidney disease/kidney failure requiring a form of kidney replacement therapy such as dialysis or a kidney transplant. AAKP is proud to represent the largest base of kidney patient consumers and their care partners. The following major programs and initiatives are key to AAKP's service to the kidney patient community: Association web page, Association social media platforms and other digital communication tactics, Decade of the Kidney, AAKP Global, Patient Voice Patient Choice, AAKP Action Center, Ambassador Initiative (National and International), Signature Programs (including Global Summit on Kidney Disease Innovations, Policy Summit, National Patient Meeting, Policy Roundtables), and educational programming/resources.
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IRS990/ProgSrvcAccomActy3Grp/Desc0Patient Information and Education AAKP firmly believes, as research has also shown, that patient and family member/caregiver education is an integral part of treatment and enhancing quality of life. Not educating a patient and their care partner about their condition and treatment options leaves the patient at risk for complications as well as the possibility of not selecting a course of treatment best suited for them. Education is a simple and effective way to improve overall health and achieve better outcomes.In the same vein, AAKP is uniquely positioned to ensure the patient has a central role in research and other activities that are designed to determine optimal approaches and strategies for providing healthcare services, assistance programs, access to new products and services, etc. AAKP constituents represent all ages, modalities, ethnicities, disease states, and a variety of demographic indicators. AAKP's research capabilities have grown rapidly, and the Association has created a sophisticated database and expansive social media channels which allow AAKP to better connect and learn from its constituents. In turn, AAKP provides education to patients and caregivers on what it means to be involved in research initiatives as well as opportunities to get involved. From online surveys, interviews, focus groups, and clinical trial awareness campaigns - AAKP is focused on inserting important patient insight and preferences into research to help inform innovation, advance care, and make a meaningful impact to improve lives - this means AAKP members are helping shape the future policies and discoveries that characterize kidney care!AAKP is known within the renal community as a leader in quality education; taking time to produce programs and materials that are current, relevant and address the most pressing issues patients and their families face. AAKP is deliberate in its development of educational programs, working closely with its Medical Advisory Board, health educators and fellow patients to create unbiased, reliable resources that are easily understood and beneficial to patients. AAKP routinely uses matrices to measure program outcomes to assess effectiveness and success as well as opportunities for enhancement. The AAKP fulfills our educational mission through an extensive patient education program to inform and educate kidney patients, their families, and the general public on kidney diseases. To meet the needs of all individuals, AAKP offers its programs in a variety of mediums: print, web-based and live (in-person). AAKP services more than one million individuals annually via its various educational programs and communication platforms. AAKP's bimonthly magazine, aakpRENALIFE, averages more than 400,000 readers/views annually and includes information about the latest news, education, policy/legislative issues, innovations/research occurring in the kidney community and patient/caregiver/living donor profiles. The magazine is also distributed to over 7,000 dialysis centers nationwide and has a substantial afterlife as it remains in dialysis centers for quite some time after mailing. aakpRENALIFE is available via print/digital medium and is archived on www.aakp.org for a term of one year.AAKP's monthly e-newsletters, collectively, were delivered more than 250,000 times during this year - including aakpRENALFLASH (designed for individuals on dialysis); Kidney Transplant Today (designed for individuals with or interested in a kidney transplant); Kidney Beginnings (designed for and new patients learning more about their disease; At Home with AAKP (designed for individuals on or interested in home dialysis therapies) and AAKP Pediatric Kidney Patients (designed for peds, adolescents and their families). AAKP hosts its monthly HealthLine and HealthLine Innovator webinar series for patients and the public on timely and relevant topics such as managing risk factors for kidney disease (diabetes/hypertension); understanding dialysi
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