American Kidney Fund, Inc. HQ

Fighting on all Fronts

aka AKF   |   Rockville, MD   |  www.kidneyfund.org

Mission

We fight kidney disease and help people live healthier lives.

Ruling year info

1971

President and CEO

Ms. LaVarne A. Burton

Main address

11921 Rockville Pike Suite 300

Rockville, MD 20852 USA

Show more contact info

EIN

23-7124261

NTEE code info

Kidney (G44)

Diseases of Specific Organs (G40)

Specific Organ Research (H40)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Patient assistance programs

We are proud to be the nation’s leading patient-focused kidney nonprofit, providing the largest and most comprehensive programs of charitable assistance to dialysis patients in the United States. Our financial assistance programs help patients to maintain their health insurance coverage and pay for treatment-related essentials that insurance will not cover, such as transportation to dialysis, nutritional products and emergency assistance. We help patients in all 50 states, the District of Columbia, and U.S. territories. Our grant programs include:

 Health Insurance Premium Program which provides grants to low-income dialysis patients to pay insurance premiums for Medicare, Medigap, COBRA, employer group health and other commercial health insurance policies
 Safety Net Program which provides grants to pay for treatment-related expenses not covered by insurance
 Prescription drug assistance, providing certain prescription medications at no charge to financially qualified patients who have no prescription drug coverage
 Summer Enrichment Program which provides grants to help children with kidney disease attend specialty camps that can accommodate their medical needs

Population(s) Served
People with diseases and illnesses

When a flood, hurricane, tornado or other disaster strikes a community, the American Kidney Fund’s Disaster Relief Program helps kidney patients get back on their feet. The program provides emergency grants to help patients replace medications, food and household items, pay for other lost necessities, and pay for transportation to treatment. AKF has provided significant assistance over the years during major catastrophes, such as hurricanes Katrina and Sandy, and more recently, hurricanes Harvey, Irma and Maria.

Population(s) Served
People with diseases and illnesses

Empowering kidney patients and those at risk for kidney disease to live their healthiest lives is at the heart of our broad-based, award-winning education programs.

 ACT on Anemia provides valuable information about anemia, which can be both a symptom and a side effect of kidney disease. KidneyFund.org/anemia
 FIRST30 helps patients new to dialysis to adjust to their new normal with information, checklists and videos. KidneyFund.org/first30
 Be Hep C Smart is an educational campaign about the links between hepatitis C and kidney disease, and offering resources in English and Spanish
 Our award-winning Kidney Today blog brings voices from the fight against kidney disease—patients, their loved ones, caregivers and more. KidneyFund.org/kidney-today
 Our award-winning website, KidneyFund.org, provides a wealth of information about the kidneys, kidney health and kidney disease, along with extensive information about the programs and services of the American Kidney Fund. Kidney health content is available in both English and Spanish. KidneyFund.org, KidneyFund.org/en-espanol
 Monthly webinars for patients and caregivers cover diverse topics important to those living with kidney disease. All webinars are archived for on-demand viewing. KidneyFund.org/webinars
 Infographics and fact sheets can be downloaded and printed for reference and educational purposes.
 Free online continuing education courses for health care professional provide CE credits on topics relevant to caring for patients with kidney disease.

Population(s) Served
People with diseases and illnesses

To address the enormous public health threat of kidney disease, AKF reaches into communities at risk to increase awareness and empower those at risk to help prevent the disease. AKF provides free health screening to thousands of Americans at risk for kidney disease each year.
• Our Know Your Kidneys™ program is a comprehensive outreach, education and screening program designed to reach deep into the community to residents at high risk for kidney disease. Through a combination of small community-based screenings and large events supported by media outreach and social media engagement, we are able to educate people at risk about the risk factors for kidney disease and how they can help to prevent it.
• The Kidney Health Educator program amplifies our outreach by training members of the community to spread awareness of kidney disease in group settings or one-on-one counseling in places of worship, or anywhere in their communities.
• Our toll-free HelpLine (866.300.2900) provides resources and referrals to answer questions about kidney disease, its causes and how to prevent it.

Population(s) Served
People with diseases and illnesses
Ethnic and racial groups

Since 1989, our Clinical Scientist in Nephrology (CSN) fellowships have funded some of nephrology’s brightest young researchers. The program is designed to improve the quality of care provided to kidney patients and to promote clinical research in nephrology. Our CSN fellows conduct prevention and outcomes research while receiving advanced training in essential skills such as medical ethics, biostatistics and epidemiology. Many former CSN fellows have gone on to distinguished careers in the field, conducting groundbreaking research that advances knowledge and treatment of kidney disease.

Population(s) Served
People with diseases and illnesses

We advocate for policies that improve access to health care and that strengthen quality of care for individuals with kidney disease. Together with our nationwide Advocacy Network of patients and caregivers in all 50 states and the District of Columbia, we work with Congress, the administration, federal agencies, and state governments to advance legislation and regulatory policies important to kidney patients and their families. KidneyFund.org/advocacy

Population(s) Served
People with diseases and illnesses

Our nationwide grassroots fundraising community, KIDNEYNATION, unites Americans who are raising funds to support AKF’s mission of helping people fight kidney disease and live healthier lives. Through KIDNEYNATION, fundraisers can create uniquely personal fundraising campaigns that reflect their personalities, their interests and their reasons for funding the fight against kidney disease. Many members of the American Kidney Fund’s KIDNEYNATION fundraise by doing the things they already love doing—everything from holding a bake sale to running a 5K race to climbing Mount Everest. KidneyNation.org

Population(s) Served
People with diseases and illnesses

Where we work

Awards

4 star rating for 19 consecutive years 2020

Charity Navigator

Top Rated Charity 2020

Charity Watch

Accredited Charity 2020

BBB for Nonprofits -Wise giving Alliance

Top Charity 2012

Consumers Digest

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of new advocates recruited

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, Families, People with diseases and illnesses

Related Program

Advocating for kidney patients

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

AKF advocates for kidney patients. AKF has 16,000 advocates. We fought against discriminatory health insurance practices & advocated for increased federal funding for kidney disease research.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Related Program

Education programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

AKF has 150,000 patients, loved ones, renal professionals and people at risk following AKF on social media learning about the risk factors of kidney disease and how AKF financially helps patients.

Number of clients served

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

Patient assistance programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

AKF provided treatment-related financial assistance to more than 94,000 people in all 50 states, DC and every U.S. territory in 2019, representing 1 out of every 6 U.S. dialysis patients.

Total amount of direct financial assistance to low-income ESRD patients

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

Patient assistance programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

AKF provided treatment-related financial assistance to more than 94,000 people in all 50 states, DC and every U.S. territory in 2020, representing 1 out of every 6 U.S. dialysis patients.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The AKF Strategic Plan contains two new critical focus areas. The first is to increase the proportion of persons with CKD who know they have impaired renal function, or high-risk factors for CKD, and by so doing, contribute to a reduction in kidney disease-related deaths and disabilities. This objective aligns with goals contained in the U.S. Department of Health and Human Services' Healthy People 2020 initiative. Specifically, the national goal is to increase by 4 percentage points the number of people ages 45 and older who have CKD and are aware they have reduced kidney function. The government measures awareness with the NHANES survey, which asks, “Have you ever been told by a doctor or other health
professional that you had weak or failing kidneys?"
CKD is a progressive condition. It has no symptoms in the early stages. Individuals with early CKD can only become aware of having CKD if they are tested for it. Early detection is the key to managing its progression and preventing CKD from leading to kidney failure, cardiovascular events, or death. Individuals with risk factors must know about CKD and their risk so they can request screening; and healthcare providers must test individuals who are at risk and explain to them their results.
In its earliest stage, stage 1, kidney function is slightly impaired. In its final stage, stage 5, kidney failure has occurred and the individual must have dialysis or transplant to survive.
Between 1999 and 2004, federal survey data showed that only 7.3 percent of adults 45 and older with CKD stages 1-4 were aware they had the disease.
Achievement of this Healthy People 2020 awareness objective will mean that by 2020, 11.3 percent of adults 45 and up who have CKD will be aware they have it. On a practical level, that means fewer people will experience cardiovascular events from undiagnosed kidney disease, fewer people will show up in emergency rooms with sudden symptoms, only to be told they are in kidney failure, and fewer people will die from CKD. More people will work with a physician to manage their early kidney disease, slowing or stopping its progression. More people will be able to prepare appropriately for dialysis if it is needed, and thereby have a greater likelihood of positive health outcomes. For all of these reasons, it is critical to increase the number of people who are aware they have CKD, or who know that they have risk factors for the disease and should be tested.
A nationwide effort is necessary to achieve this objective. No organization can do it alone. The American Kidney Fund will contribute to achievement of this Healthy People objective in several important ways. Our second focus area is to lead a long-term, strategic advocacy effort that engages patients, caregivers, strategic partners and others who will collaborate with AKF in a variety of ways to increase awareness and understanding of kidney disease among the public, media and policymakers.

Public awareness efforts, including media campaigns and community events, to alert individuals with diabetes, hypertension, and other key risk factors that they need to be tested for CKD; health education and kidney health screenings for individuals who have risk factors
for kidney disease; and Professional education for primary care practitioners to encourage screening of individuals with risk factors, and to encourage practitioners to consistently report test results and implications for health to patients.
Developing our nationwide Advocacy Network, by giving members the platform and educational tools they need to educate their friends, neighbors, communities and media about kidney disease;
Engaging our strategic partner organizations by providing kidney disease educational tools that they may use with their own constituents, and by enlisting their support to help us achieve key policy or legislative goals; and working with these key stakeholders to influence media and policymaker awareness and understanding of kidney disease.

AKF has grown into the nation's leading provider of charitable assistance to dialysis patients. In 2020, we helped more than 94,000 low-income kidney failure patients in all 50 states gain access to lifesaving healthcare, including dialysis and transplant, by providing need-based grants to pay for health insurance premiums, transportation to treatment, prescription medications and nutritional products, and emergency assistance in the wake of natural disasters. With AKF’s support for health coverage they otherwise could not afford, more than 1,600 dialysis patients had lifesaving kidney transplants and post-transplant care, representing 7% of all U.S. kidney transplants during the year. Our Coronavirus Emergency Fund, established in March 2020, provided $3.1 million in emergency financial assistance to almost 13,000 low-income dialysis and transplant patients impacted by the pandemic—the only program of its kind serving the kidney community. We provided nearly 350 dialysis patients disaster relief assistance in the wake of hurricanes, floods, and wildfires. We opened a new program, the Post-Transplant Testing Program, for low-income recent transplant recipients. Patients seeking help from AKF must demonstrate financial need through completion of a grant application. On average, our grant recipients have total household incomes less than $25,000 per year.
37 million Americans have chronic kidney disease (CKD), and most don’t realize they have it. AKF’s education programs help individuals identify their risks for CKD and manage CKD, kidney failure and co-morbidities. We reached millions of people in 2020 with awareness and prevention information on our website. Due to the pandemic, we transformed our national screening program into a virtual Kidney Action Week from September 14-19, 2020. The event was held in a dedicated Facebook Live group with more than 2,000 people joining. Throughout Kidney Action Week, participants contributed hundreds of posts, and nearly 27,000 comments and reactions to the interactive educational information we shared.
Our website, KidneyFund.org, had more than 17 million pageviews as we continued to add new educational content. We continued to build our diet and nutrition website for kidney patients, Kidney Kitchen, which now features over 500 recipes, all of which have been evaluated by a dietitian and tested by a professional chef. We continued to run awareness campaigns which focus on managing various aspects of kidney disease and its co-morbidities; free, monthly webinars for patients, families and caregivers; our Kidney Health Coach peer-to-peer community outreach program; and a comprehensive series of printed health education and disease management materials for people with kidney disease and kidney failure. We continually enhance our education content and offerings. In 2020 we expanded our information on anemia, gout, rare diseases and many other topics.

We provided treatment-related financial assistance to more than 87,000 people in all 50 states, the District of Columbia and every U.S. territory in 2020.

In 2020, we helped more than 94,000 low-income kidney failure patients in all 50 states gain access to lifesaving healthcare, including dialysis and transplant, by providing need-based grants to pay for health insurance premiums, transportation to treatment, prescription medications and nutritional products, and emergency assistance in the wake of natural disasters. With AKF’s support for health coverage they otherwise could not afford, more than 1,600 dialysis patients had lifesaving kidney transplants and post-transplant care, representing 7% of all U.S. kidney transplants during the year. Our Coronavirus Emergency Fund, established in March 2020, provided $3.1 million in emergency financial assistance to almost 13,000 low-income dialysis and transplant patients impacted by the pandemic—the only program of its kind serving the kidney community. We provided nearly 350 dialysis patients disaster relief assistance in the wake of hurricanes, floods, and wildfires. We opened a new program, the Post-Transplant Testing Program, for low-income recent transplant recipients. Patients seeking help from AKF must demonstrate financial need through completion of a grant application.

37 million Americans have chronic kidney disease (CKD), and most don’t realize they have it. AKF’s education programs help individuals identify their risks for CKD and manage CKD, kidney failure and co-morbidities. We reached millions of people in 2020 with awareness and prevention information on our website. Due to the pandemic, we transformed our national screening program into a virtual Kidney Action Week from September 14-19, 2020. The event was held in a dedicated Facebook Live group with more than 2,000 people joining. Throughout Kidney Action Week, participants contributed hundreds of posts, and nearly 27,000 comments and reactions to the interactive educational information we shared.

Our website, KidneyFund.org, had more than 17 million pageviews as we continued to add new educational content. We continued to build our diet and nutrition website for kidney patients, Kidney Kitchen, which now features over 500 recipes, all of which have been evaluated by a dietitian and tested by a professional chef. We continued to run awareness campaigns which focus on managing various aspects of kidney disease and its co-morbidities; free, monthly webinars for patients, families and caregivers; our Kidney Health Coach peer-to-peer community outreach program; and a comprehensive series of printed health education and disease management materials for people with kidney disease and kidney failure. We continually enhance our education content and offerings. In 2020 we expanded our information on anemia, gout, rare diseases and many other topics. We also published many additional pages for our Spanish-language website.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    We serve individuals with and at risk for kidney disease.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    AKF collects feedback from renal professionals and patients annually related to our grants management system. We take this data and information and that drives enhancements to our system to enable the system to be more user friendly. A recent example of a change included enhanced used of debit cards for payments of insurance.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders,

  • How has asking for feedback from the people you serve changed your relationship?

    The feedback we obtain assists with changes in our grants management system and enhancements of policies and procedures to ensure we are meeting the needs of the patients we serve.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

American Kidney Fund, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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American Kidney Fund, Inc.

Board of directors
as of 8/17/2021
SOURCE: Self-reported by organization
Board chair

Ms. Maureen Franco

Cambridge Biomarketing

Term: 2021 - 2023

LaVarne Burton

American Kidney Fund ex-officio

Robert Tarola, CPA, CGMA

Right Advisory

Jerry Klepner

JK Consulting

John Moriarity

Portola Pharmaceuticals

Yoshio Hall, M.D., MS

Group Health Cooperative

Larry Warren

LHW, LLC

George Burton III, M.D.

Maria Grasso

Flushing Financial Corporation

Richard Harrison

Protek Consulting

John Hanley, CFA

Goldman, Sachs & Co.

Arthur Metcalf II, CPA, ABV, CFF

Retired

Gregory Madison

Elaine Milem

University of Kentucky

Maureen Franco

Cambridge BioMarketing

William Schuyler

DRI Capital

Julie Wright-Nunes, M.D., MPH

University of Michigan

Donna Christensen

Michael Flood

Northleaf Capital Partners

Pamela McNamara

Health Helm, Inc.

Richard Miller

Southcoast Health

Silas Norman

University of Michigan

Lisa Robin

Federation of State Medical Boards

Andrew Shore

Jochum Shore & Trossevin

Heidi Wagner

Global Blood Therapeutics

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 11/12/2019

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Black/African American/African
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 11/12/2019

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.