Autoimmune Association

Leading the fight against autoimmune disease

aka American Autoimmune Related Diseases Association (AARDA)   |   Clinton Township, MI   |  http://www.autoimmune.org

Mission

The Autoimmune Association leads the fight against autoimmune disease by collaborating to improve healthcare, advance research, and support the community through every step of the journey.

Ruling year info

1992

CEO

Molly Murray

Main address

19176 Hall Road Suite 130

Clinton Township, MI 48038 USA

Show more contact info

EIN

38-3027574

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Medical Disciplines (G90)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The Autoimmune Association leads the fight against autoimmune disease by collaborating to improve healthcare, advance research, and support the community through every step of the journey.

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 Education and Support Services

AARDA offers patient education programs, a national summit on autoimmune disease, scientific symposia, "Linking Together for a Cure" Autoimmune Awareness Walks, ADAM (Autoimmune Disease Awareness Month) our annual awareness campaign held every March, and other special events and projects. AARDA also advocates on behalf of autoimmune patients, facilitates the National Coalition of Autoimmune Patient Groups (NCAPG), and facilitates patient participation in autoimmune research through its ARNet registry.

Population(s) Served
People with diseases and illnesses
Caregivers

AARDA's national awareness campaign, "Linking Together for a Cure" builds awareness about autoimmune diseases. The campaign includes public forums; Autoimmune Awareness Walks; health fairs; grassroots events; and media and social media campaigns.

Public forums are held across the country. These forums are free and open to autoimmune patients, their families, medical professionals and the general public.  The theme is "What Every American Needs to Know About Autoimmune Disease." World-class experts in their fields present on current and emerging autoimmune topics as well as general autoimmune about diagnosis, treatment and research. Experts include Rita Baron-Faust, author of The Autoimmune Connection, Dr. Robert Phillips of The Center For Coping, and Virginia Ladd, founder and immediate past president of AARDA.

Autoimmune Awareness Walks are held in major cities across the United States. These events bring patients, family members, caregivers, friends and others together for a day that includes speakers, resources and information, entertainment and a Warriors Walk to honor and support the 50 million people nationwide living with autoimmune disease.

Population(s) Served
People with diseases and illnesses
Families

AARDA advocacy campaigns address ongoing and emerging issues that have a profound impact on autoimmune patients and families. AARDA's Let My Doctors Decide campaign works to ensure patient access to health care and the life-saving medicines they need. Our Patients Deserve Better campaign works to ensure that co-pay assistance programs are not revoked and that patients are able to afford the medicines they need as prescribed.

Population(s) Served
People with diseases and illnesses
Families

AARDA funds, supports, or collaborates on a number of autoimmune research efforts, including our Virginia T. Ladd Young Investigator Research Program; AARDA scientific meetings, symposia and colloquia; the Deborah and Noel Rose Center for Autoimmune Disease Research at Johns Hopkins; the AHN Autoimmunity Institute; and our ARNet registry, which facilitates patient participation in autoimmune research. AARDA's Scientific Advisory Board consists of leading experts and is led by Dr. Betty Diamond.

Population(s) Served
People with diseases and illnesses
Women and girls

Where we work

Accreditations

Better Business Bureau Wise Giving Alliance 2009

Charity Navigator 2009

Charity Navigator 2010

Charity Navigator 2011

Charity Navigator 2012

Charity Navigator 2013

Charity Navigator 2014

Charity Navigator 2015

Charity Navigator 2016

Better Business Bureau Wise Giving Alliance 2010

Better Business Bureau Wise Giving Alliance 2011

Better Business Bureau Wise Giving Alliance 2012

Better Business Bureau Wise Giving Alliance 2013

Better Business Bureau Wise Giving Alliance 2014

Better Business Bureau Wise Giving Alliance 2015

Better Business Bureau Wise Giving Alliance 2016

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 groups brought together in a coalition/alliance/partnership

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

Adults

Related Program

Patient Education and Support Services

Type of Metric

Other - describing something else

Direction of Success

Increasing

Context Notes

The NCAPG, works to consolidate the voice of autoimmune disease patients and to promote increased education, awareness, and research .

Number of informational packets mailed

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

Patient Education and Support Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

AD informational packets sent out to patient inquirers, grassroots project leaders, and awareness events

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 Autoimmune Association leads the fight against autoimmune disease by collaborating to improve healthcare, advance research, and support the community through every step of the journey.

AARDA sponsors numerous autoimmune disease forums throughout the United States each year. These public awareness events educate attendees on the 100+ autoimmune diseases impacting one in every five Americans. The forums are designed so that registrants can take the information back to their communities in an effort to increase autoimmune disease awareness.

Also, AARDA funds basic research into autoimmunity as the underlying factor in the majority of serious chronic illnesses. At present, there is no collaborative approach to autoimmune research. The focus of most research has been directed to specific diseases rather than into autoimmunity.

Finally, AARDA sponsors physician conferences and symposia in order to encourage collaboration in research and cross fertilization of treatment approaches, scientific knowledge, and pharmaceutical advancements.

AARDA has a board of directors and an advisory board that is made up of dedicated autoimmune disease patients, researchers and scientists from wide-ranging backgrounds.

AARDA is the founder and facilitator of the National Coalition of Autoimmune Patient Groups (NCAPG). These groups work together to consolidate the voice of autoimmune disease patients and to promote increased education, awareness, and research into all aspects of autoimmune diseases through a collaborative approach.

We have accomplished many of our goals:
• “The Microbiome and Autoimmune Disease," Leesburg, VA
• 9th International Congress on Autoimmunity, Nice, France
• 16th Annual Autoimmunity Day, Center for Autoimmune Disease Research, Johns Hopkins University
• Federation of Clinical Immunology Societies Annual Meeting “FOCiS 2014"
• Founded and facilitated the National Coalition of Autoimmune Patient Groups (NCAPG)
• Co-sponsored with the NCAPG a news briefing at the National Press Club, Washington, DC
• Conducted a Web-based survey to collect data on how the Affordable Care Act affects AD patients
• Established the Virginia T. Ladd Young Investigator Research Program
• Established the month of March as National Autoimmune Diseases Awareness Month (2015)
• Partnered with the Allegheny Health Network to open the AHN Autoimmunity Institute (2018)
• Created the Autoimmune Research Network (ARNet), a registry facilitating patient participation in research
• Partnered with the CDC on a National Briefing on COVID-19 and Autoimmune Disease (2020)

Unfortunately, we have not accomplished determining a cure for autoimmune disease. We will continue to work towards a cure!

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 shared information about our current feedback practices.
  • 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), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • 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,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

  • 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 engage the people who provide feedback in looking for ways we can improve in response,

  • What challenges does the organization face when collecting feedback?

Financials

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

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Autoimmune Association

Board of directors
as of 12/9/2021
SOURCE: Self-reported by organization
Board chair

Richard Hodge

Michelle Ouellet

CACI International

Nona Bear

No affiliation

Robert Phillips

Director, Center for Coping

Michael Linn

COO, Varadero Capital, L.P.

Scott Selby

Stonehawk Capital Management LP

Lilly Stairs

Savvy Cooperative

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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 12/09/2021

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

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 12/09/2021

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

Policies and processes
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • 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.