PLATINUM2023

American Association of Kidney Patients, Inc. HQ

Founded by Patients for Patients

aka AAKP   |   Tampa, FL   |  www.aakp.org

Mission

As the oldest and largest, independent kidney patient organization in the U.S. – 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. 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 the elimination of barriers for patient access to available treatment options.

Ruling year info

1976

Executive Director

Diana Clynes

Main address

14440 Bruce B. Downs Blvd.

Tampa, FL 33613 USA

Show more contact info

EIN

11-2306416

NTEE code info

Kidney (G44)

Alliance/Advocacy Organizations (B01)

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

SOURCE: Self-reported by organization

AAKP is the oldest and largest, independent kidney patient organization in the U.S. – 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. 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 the elimination of barriers for patient access to available treatment options.

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?

HealthLine

HealthLine is currently a webinar-based program (with the conference call option still available for those without a computer) that conveniently educates patients and their family members on a variety of important health care topics from the comfort of their home or office. HealthLine addresses many issues patients with kidney disease face such as diet/nutrition, mention/social/emotional health, medication management, renal replacement treatment options, and co-morbid conditions kidney patients cope with such as hyperparathyroidism, bone disease, anemia, heart disease, and many more.

Population(s) Served
Adults

AAKP's National Patient Meeting is the largest kidney patient education and advocacy meeting in the United States. This annual meeting takes place over three days, in a different location each year, and provides patients and their care partners the opportunity to gain information and advocacy skills they need to understand their condition and make informed choices regarding their care; to be even more effective in using their voices and experiences to improve access and quality of care for kidney patients; and to influence public policy decisions. Professionals attending the meeting are able to receive continuing education (CE) credits.

Population(s) Served
Adults
People with diseases and illnesses

Where we work

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 meetings with policymakers or candidates

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

Health, Age groups, Ethnic and racial groups, Caregivers, Veterans

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Independently and in partnership with our allies, AAKP conducted over 600 Virtual Hill visits to both the Legislative and Ex Branches to advocate for improved and advanced care for kidney patients.

Number of organizational partners

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

AAKP honors its patient-centered mission through a strategic network of strong allies and partners including professional associations, patient advocacy groups, industry, and government agencies.

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.

AAKP strives to:
- Elevate the patient voice in national policy debates and throughout drug and device development
- Protect the unique relationship between patients and their doctors
- Educate patients and preserve their choices as informed consumers of healthcare
- Maintain independence in all national policy and operational decisions
- Operate on the policy of "no surprises" among trusted allies and government officials

In order to honor our purpose and fulfill our strategic principles, AAKP follows a very deliberate strategy that utilizes our principles as the basis of decision-making for long-term objectives and our short-term decisions. AAKP's National Strategy includes operating under its two Centers, the Center for Patient Engagement & Advocacy and the Center for Patient Research & Education.

In order to deliver the highest value to patients, be good stewards of donor and sponsor funds and maintain high impact advocacy work, our strategy informs all decisions and allows us to fully integrate operations including:
- Board Member Activity
- Board Member Recruitment
- Education Programs
- National Advocacy - Executive Branch and Congress
- Stakeholder Engagements and Coalitions
- Strategic Communications
- Development Activity

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 webinar series for patients and the public on timely and relevant topics such as managing risk factors for kidney disease (diabetes/hypertension); understanding dialysis options; kidney transplantation; how to choose/change treatment options; diet/nutrition; importance of exercise; coping with a chronic illness, advocacy and social media; and more. These webinars are recorded and made available OnDemand to accommodate all schedules and needs and reach thousands annually. Real-time attendance for AAKP’s HealthLine webinars has increased by 235% (a combined 455% increase since 2017) and OnDemand views of recorded webinars has increased by 139%.

AAKP utilizes a variety of communication platforms to reach approximately one million individuals annually. Included in that reach is AAKP’s social medial platforms: Facebook, Twitter, LinkedIn, Instagram, Pinterest, and YouTube Channel. AAKP’s website (www.aakp.org) has over 420,000-page views annually. The website features the AAKP Center for Patient Research and Education and Center for Patient Engagement and Advocacy – including:
• education (CKD, dialysis, transplant, co-related health conditions; rare disease; nutrition); clinical trials/market research opportunities; Action Center (advocacy initiatives; policy issues; voter registration); patient engagement (Ambassador Initiative; Speakers Bureau; Veterans Health initiative; KidneyWorks; Support Groups), programs/events

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.
  • 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

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

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

American Association of Kidney Patients, 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

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

American Association of Kidney Patients, Inc.

Board of directors
as of 02/02/2023
SOURCE: Self-reported by organization
Board chair

Edward Hickey

President

Term: 2022 - 2024

Richard Knight

Past President

Paul T Conway

Chair of Policy and Global Affairs

Suzanne Ruff

Treasurer

Lana Schmidt

Board of Director

Kent Bressler

Board of Director

Edward V Hickey

President

Jennifer L Jones

Vice President

Janice Lea

Board of Director

James W. Myers, III

Board of Director

David Rodriquez

Board of Director

Dale Rogers

Secretary

Sara E. Schaeffer

Board of Director

Barry H. Smith

Board of Director

Catherine Campbell

Board of Director

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 2/16/2021

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 12/17/2019

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 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 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 seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.