Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for instructions and the latest information.
| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
|
Total |
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Calendar year (or fiscal year beginning in) ![]() |
(a) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 543,502 | 454,193 | 573,211 | 1,151,107 | 990,174 | 3,712,187 |
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.... | ||||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | ||||||
| 4 | Total. Add lines 1 through 3 | 543,502 | 454,193 | 573,211 | 1,151,107 | 990,174 | 3,712,187 |
| 5 | The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f).. | ||||||
| 6 | Public support. Subtract line 5 from line 4. | 3,712,187 | |||||
Calendar year
(or fiscal year beginning in) ![]() |
(a) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 543,502 | 454,193 | 573,211 | 1,151,107 | 990,174 | 3,712,187 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | ||||||
| 9 | Net income from unrelated business activities, whether or not the business is regularly carried on.. | ||||||
| 10 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. | 4,799 | 3,677 | 1,471 | 355 | 10,302 | |
| 11 | Total support. Add lines 7 through 10 | 4,017,652 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . | ||||||
| 2 | Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose | ||||||
| 3 | Gross receipts from activities that are not an unrelated trade or business under section 513 ..... | ||||||
| 4 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf... | ||||||
| 5 | The value of services or facilities furnished by a governmental unit to the organization without charge | ||||||
| 6 | Total. Add lines 1 through 5 | ||||||
| 7a | Amounts included on lines 1, 2, and 3 received from disqualified persons | ||||||
| b | Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year. | ||||||
| c | Add lines 7a and 7b.. | ||||||
| 8 | Public support. (Subtract line 7c from line 6.) | ||||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2015 | (b) 2016 | (c) 2017 | (d) 2018 | (e) 2019 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | ||||||
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | ||||||
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | ||||||
| 11 | Net income from unrelated business activities not included in line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | ||||||
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Net short-term capital gain | 1 | ||||
| 2 | Recoveries of prior-year distributions | 2 | ||||
| 3 | Other gross income (see instructions) | 3 | ||||
| 4 | Add lines 1 through 3 | 4 | ||||
| 5 | Depreciation and depletion | 5 | ||||
| 6 | Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) | 6 | ||||
| 7 | Other expenses (see instructions) | 7 | ||||
| 8 | Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) | 8 | ||||
| Section B - Minimum Asset Amount | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): | 1 | ||||
| a | Average monthly value of securities | 1a | ||||
| b | Average monthly cash balances | 1b | ||||
| c | Fair market value of other non-exempt-use assets | 1c | ||||
| d | Total (add lines 1a, 1b, and 1c) | 1d | ||||
| e |
Discount claimed for blockage or other factors (explain in detail in Part VI): |
|||||
| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 1-1/2% of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by .035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | ||
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
||
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | ||
| 4 Amounts paid to acquire exempt-use assets | ||
| 5 Qualified set-aside amounts (prior IRS approval required) | ||
| 6 Other distributions (describe in Part VI). See instructions | ||
| 7Total annual distributions. Add lines 1 through 6. | ||
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
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| 9 Distributable amount for 2019 from Section C, line 6 | ||
| 10 Line 8 amount divided by Line 9 amount | ||
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2019 |
(iii) Distributable Amount for 2019 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2019 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2019 (reasonable cause required-- explain in Part VI). See instructions. |
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| 3 Excess distributions carryover, if any, to 2019: | ||||
| a From 2014....... | ||||
| b From 2015....... | ||||
| c From 2016....... | ||||
| d From 2017....... | ||||
| e From 2018....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2019 distributable amount | ||||
|
i
Carryover from 2014 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from 3f. | ||||
| 4Distributions for 2019 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2019 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from 4. | ||||
|
5
Remaining underdistributions for years prior to 2019, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
6
Remaining underdistributions for 2019. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
7 Excess distributions carryover to 2020. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2015..... | ||||
| b Excess from 2016..... | ||||
| c Excess from 2017..... | ||||
| d Excess from 2018..... | ||||
| e Excess from 2019..... | ||||
| Facts And Circumstances Test |
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| Return Reference | Explanation |
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| Software ID: | |
| Software Version: |
Attach to Form 990 or 990-EZ.
Go to www.irs.gov/Form990 for the latest information.
| Return Reference | Explanation |
|---|---|
| Form 990, Part I, Line 1, Description of Organization Mission continued: | In 2020, AAKP volunteers accelerated the organization's national and global reach through sophisticated virtual platforms, international patient group partnerships, clinical journal editorials, television, radio, social media, and a growing Patient Ambassador Initiative. At the start of the COVID-19 pandemic, AAKP changed all 2020 events to free virtual access, prioritized COVID-19 topics, and leveraged tactics to engage a wider audience. In the past eight months, AAKP has broadcasted expert COVID-19 insights through one global and two national virtual events, a dozen webinars, and launched advocacy campaigns to highlight disparities in minority and kidney patient representation in COVID-19 clinical trials and vaccine distribution protocols. Viewership for 2020 AAKP programs now exceeds 80,000 people across 70 countries and is growing rapidly. International and national program faculty has included 90 medical practitioners and researchers, and 60 patient experts. The AAKP Global Summit on Kidney Innovations, conducted in partnership with the George Washington University School of Medicine and Health Sciences, alone reached over 20,000 patients and professionals worldwide in July of 2020. |
| 4c continued | KidneyWorks: The KidneyWorks Initiative research and policy collaboration aims to help Americans with chronic kidney disease who are not on dialysis maintain their jobs and slow their disease. KidneyWorks seeks to reduce disability and dependency and help people with ND-CKD remain active, productive, taxpaying citizens by taking proactive steps to educate patients, families, clinicians, and lawmakers and enact work-friendly practices and policies. Phase One (Completed) Phase One included a national stakeholder meeting, preparing and releasing a policy White Paper and Executive Summary, conducting national media rollout, and developing www.kidneyworks.org. The National Roundtable held in Washington, D.C. in June 2016 include sectors of the kidney community - patients, non-profits, professionals, members of industry and representatives from Federal government. The comprehensive KidneyWorks White Paper and Executive Summary was formally and publicly released in July 2017. The report identified barriers to patients' desire and ability to keep working and outlined a comprehensive strategy to remove them. The National Media rollout included more than 800 media websites and channels featuring KidneyWorks and the White Paper, including Fox Business News and Nephrology News & Issues. Phase Two (Underway) Phase Two will use strategies identified in Phase One to develop interventions to help people with ND-CKD slow their disease progression and keep their jobs, including targeted messaging, tools and resources, telephone helpline support, and a robust database to track contacts and outcomes. Phase Three (2022+) Phase Three will include evaluation of the impact of KidneyWorks by using the database and conducting outcomes research. Fabry Disease Diagnostic and Education Project: AAKP and Emory University have partnered to conduct an educational research project aimed at providing free genetic testing to individuals affected and at-risk for Fabry Disease. The research findings will help identify markers to Fabry that in turn will allow patients affected be diagnosed earlier in the disease state and begin intervention and treatment immediately. AAKP continues to develop many educational resources such as medical articles, brochures and webinars highlighting the advancements in Fabry Disease, best practices and the project's research findings. AAKP National Patient Meeting: The AAKP National Patient Meeting is the largest gathering of kidney patients and their care-partners in the U.S. Due to the Coronavirus pandemic, and for the safety of the AAKP professional team, speakers and audience (comprised of fellow kidney patients, healthcare professionals and industry/Federal agency partners), the 2020 National Patient Meeting was transitioned from an in-person event to an online activity. The 2020 virtual patient meeting enabled AAKP to engage its national members and furthermore a 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. AAKP will 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 committed to making certain our events, like the Annual Patient Meeting, are disseminated to the widest audience of kidney consumers and decision-makers possible. Patient Engagement & Awareness Program: 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. Medal of Excellence Award: The Medal of Excellence Award is the Association's highest honor for kidney healthcare professionals and is designed to elevate national and international figures who have been at the forefront of advancements in kidney care and patient empowerment. The award recognizes professionals who are committed to improving and extending the lives of all kidney patients through advocacy, research, technology and quality-driven treatments that protect patient dignity and fully align with patient aspirations. This prestigious award program recognizes a variety of professionals within the health care team including: nephrologists, transplant surgeons, transplant professionals, nurses, social workers, dietitians and dialysis technicians. Jenny Kitsen Patient Safety Award: Established in 2013 by the Network of New England Board of Directors to continue the patient safety work of the nonprofit organization led by Jenny Kitsen. That organization held the CMS contract for ESRD Network 1 for 35 years, from 1977-2012. The Network staff, patients and professional volunteers who supported Network activities made a number of innovative contributions to the ESRD Network Program. Under Ms. Kitsen's direction, with the Board guidance, the New England Network organization became known for its leadership in patient safety. The AAKP has accepted an endowment from the Network of New England Board of Directors to honor Ms. Kitsen through an annual lecture or program that will advance patient safety by exploring innovation in health systems management, education and best practices. Grant recipients have included: The Centers for Disease Control and Prevention; Satellite Healthcare; National Kidney Foundation; National Renal Administrators Association; A.T. Still University of Oral Health; All Kidney Patients Support Group; Renal Physicians Association; American Nephrology Nurses Association; and the Forum of ESRD Networks. AAKP Healthline Online Webinars: AAKP HealthLine is a one-hour FREE webinar program educating patients and caregivers on a variety of important topics all from the comfort of their home or office. A teleconference option is available for each program should the registrant not have computer access. All HealthLine programs are recorded and archived at www.aakp.org/aakp-healthline. Webinars are hosted monthly, recorded and archived on the AAKP website for enduring education. The archived webinars continue to be in the top five visited pages of the website. Throughout 2020, AAKP hosted a number of COVID-19 focused webinars with allied partners including the Centers for Disease Control and Prevention; the Veterans Affairs Administration; the American Society of Transplantation; and the American Society of Transplant Surgeons. AAKP Nutrition Program: The AAKP Delicious! Series features a variety of kidney-friendly recipes for patients at all stages of kidney disease. All recipes have been carefully reviewed by renal dietitians and provide indications on what type of patient these recipes are most suited for. This recipe program has been favorably reviewed by the renal practice group of the Academy of Nutrition and Dietetics. Five editions of AAKP Delicious! are available featuring more than 100 kidney-friendly recipes. AAKP Nutrition Counter is a pocket-sized guide that lists the nutrient values for standard portions of more than 300 commonly used foods. Nutrient values listed include: carbohydrates, fat, saturated fat, protein, calorie, sodium, potassium, and phosphorus levels - dietary values that must be closely monitored in kidney patients. Pocket Guides: This new brochure series offers a template for AAKP to develop a number of convenient, pocket sized guides that focus on a variety of important healthcare topics that patients can keep with that list top questions to ask their healthcare team to better understand/manage conditions. 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 and Proteinuria. All brochures are available in print and online pdf. Kidney Beginnings: This workbook provides an introduction to 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. |
| 4c continued | 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. AAKP Center for Patient Engagement and Advocacy: The AAKP has been a national leader in patient advocacy and education for over 50 years - and is the largest fully independent and patient-governed organization in the kidney ecosystem. AAKP is highly regarded across the Federal government among both career and appointed policy-makers and our influence in the Executive Branch and the U.S. Congress transfers across transitions and elections cycles due to our massive network of relationships and long-held reputation as an independent voice for patients. AAKP believes that patients and industry must be at the table together and engaged at all levels of decision-making whenever the Federal government seeks to implement wide-ranging initiatives that impact innovation and shape future access 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 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. 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. |
| 4c continued | 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, media, entertainment, government, the military and insights from our veteran populations. These sweeping changes will not be limited to our shores as Americans - they will incorporate the vibrant contributions of scientists, researchers and clinicians around the world whose achievements are moving us closer to addressing the toughest kidney diseases. As patients we know that kidney disease affects people everywhere - it does not discriminate, it knows no political affiliation and it recognizes no border. To accelerate change, AAKP believes that a far larger strategic context and message is needed to unite a broader base of Americans and far more communities behind ongoing efforts to fight kidney disease and give hope to the 40 million Americans who suffer from kidney diseases. We believe that the Decade of the Kidney will do precisely that - help explain to the general public and national policy leaders that each of our singular efforts and innovations underway in kidney disease are in fact part of a far larger national effort to save and improve lives for those who suffer from kidney disease - and those yet to be diagnosed. AAKP recommitted itself to this original formula and strategy to gain new national relevance; exponentially greater engagement and growth among kidney patients and their families; and far greater influence to push for greater patient choice and more innovative care options for patients. Working together, AAKP and its members and allies have achieved profound impacts in the past several years - including legislation that allows HIV to HIV organ transplants, lower prescription drug costs and, most recently, AAKP contributed to the White House Executive Order on Advancing American Kidney Health and the Department of Health and Human Services (HHS) initiatives to fight kidney disease. AAKP also believes that by uniting all sectors of the kidney community under one strategic theme - it will be far easier to secure additional media and grassroots support, national research funding and public understanding for kidney disease. Global Summit on Kidney Innovation The Global Summit is a two-day event in Washington, D.C. designed to engage the top international experts in the field of kidney care including healthcare professionals, academics, government leaders and regulators, industry experts, entrepreneurs and patient advocates. This event is a partnership of the George Washington University School of Medicine, one of the top medical schools in the nation with an internationally recognized kidney care program, and the American Association of Kidney Patients (AAKP), the oldest and largest fully independent kidney patient organization in the United States. The 2020 Global Summit hosted virtually in response to the Coronavirus pandemic, highlights include: Over thousands registrants, 20 special medical and patient expert sessions, 5 countries represented by speakers, and 70 countries reached via the live stream. Panel presentations and discussions were recorded and made available OnDemand on the AAKP website for enduring education. Speakers Bureau The AAKP Speakers Bureau, under the AAKP Center for Patient Engagement and Advocacy, provides the public, private sector companies and non-profit organizations with highly knowledgeable experts committed to advancing the AAKP mission through personal experiences and expertise. Speakers include AAKP National Board Members and National Ambassadors. Each speaker is well-prepared to talk before large and small audiences. Together, our speakers share a wide range of disease and treatment experiences and their combined professional portfolios include published articles and books, participation in key government initiatives, industry focus groups and clinical trials, and testimony before Federal agencies. The AAKP Speakers Bureau is AAKP's contribution to the growing movement to generate greater public understanding of kidney disease nationwide, from local towns to the corridors of government in our nation's capital. AAKP Veterans Health Initiative The AAKP Veterans Health Initiative (VHI), based within the AAKP Center for Patient Engagement and Advocacy, is designed 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. AAKP utilizes sophisticated social media and grassroots technologies to engage patients, medical professionals, and the public and to voice their concerns among policymakers. Veterans and their families face many unique challenges related to managing their healthcare and this is especially true for veterans who suffer from kidney and other complex, chronic diseases. AAKP is committed to making its fellow veterans have their voice heard, retain access to the care they have earned and are legally entitled to at the VA and elsewhere and gain the benefit of new research and innovations in the realms of biologics, diagnostics and devices. |
| 4c continued | Capitol Hill Day Visits: These educational visits 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. 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. 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 policy-makers 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. 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 organization discredit the AAKP mission and legacy? 2.Will our association with this organization confuse or contradict the AAKP message? 3.Will our association with this organization turn away potential long-term allies? 4.Will our association with this organization discourage elected/career policy-maker interest or support of policy goal? 5.Will our association with this organization fulfill a negative narrative already underway about your issue/community? Our current strategic partnerships and alliances include but are not limited to: Academy of Nutrition and Dietetics Alliance for Home Dialysis Alport Syndrome Foundation Alliance for Gout Awareness Alliance for a Stronger FDA American Kidney Fund American Nephrology Nurses Association American Society of Nephrology American Society of Pediatric Nephrology American Society of Transplant Surgeons American Society of Transplantation Dialysis Clinic, In. Emory University ESRD Rockstars For Kidney's Sake, Inc. Forum of ESRD Networks Friends of NIDDK Friends of HRSA Home Dialyzers United IGA Nephropathy Foundation of America International Home Dialysis Roundtable Kaiser Permanente GA Kidney Health Initiative Making Dialysis Safer Coalition Medical Education Institute National Association of Nephrology Technicians National Kidney Foundation National Renal Administrators Association National Psoriasis Society NephCure Kidney International Oxalosis and Hyperoxaluria Foundation Patient Access to Pain Relief (PAPR) Patient Alliance for Drug Safety Protections Polycystic Kidney Disease Foundation Precision Medicine Coalition ReMend Renal Pathology Society Renal Physicians Association Renal Support Network Rogosin Institute Scientific Registry of Transplant Recipients Society of Transplant Social Workers Southeastern Kidney Transplant Coalition TRIO - Transplant Recipients International Organization Veterans Transplant Association, and more. Contact AAKP for a full list of partners. Federal Agency Engagement: Over the course of the past year, and again as a result of our national engagement strategy, AAKP has been heavily involved with multiple Federal agencies. AAKP has traditionally worked very closely with Federal agencies since our organization leads national efforts to establish the End Stage Renal Disease Program (ESRD), administered since 1973 by Department of Health and Human Services under the Centers for Medicare and Medicaid Services (CMS). AAKP values the civil service of the United States and has maintained strong relationships with programs, agencies and personnel under every Presidential Administration since 1973 and is non-partisan in our engagements with the U.S. civil service. Below are just a few of the agencies AAKP engaged with: Center for Disease Control and Prevention (CDC) White House Office of Science and Technology Policy (OSTP) White House, National Economic Council (NEC) U.S. Department of Health and Human Services (HHS) U.S. Department of Labor (DOL) U.S. Department of Defense (DoD) DOL/Office of Disability Employment Programs (ODEP) HHS/Centers for Medicare and Medicaid Assistance (CMS) HHS/Center for Medicare and Medicaid Innovation (CMMI) HHS/Food and Drug Administration (FDA) HHS/National Institutes of Health (NIH) HHS/National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) HHS/Health Resources and Services Administration (HRSA) Veteran's Administration (VA) In addition to these agency engagements, AAKP has served as the Chair of the CMS Technical Evaluation Panel (TEP) for the CMS Dialysis Facility Compare 5 Star Rating Program as well as multiple other TEP's. AAKP also holds multiple seats on the Board and subcommittees of the Kidney Health Initiative - an FDA/ASN breakthrough collaborative and is actively involved as well in the Clinical Trials Transformation Initiative, another breakthrough collaborative between the FDA and Duke University. AAKP leadership holds positions within the NIH Kidney Precision Medicine Project, the FDA Patient Engagement Advisory Panel, and the CDC Healthcare Infection Control and Advisory Council. |
| Form 990, Part VI, Section B, line 11b | The Form 990 is reviewed in detail by the Executive Committee and Finance Committee. Both Committees approve 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 and approves the overall salary levels for all employees. |
| Form 990, Part VI, Section C, line 19 | The Final 990 and Audit is made available on the organization website. |
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