THE NATIONAL ADRENAL DISEASES FOUNDATION INC

aka NADF   |   Newton, MA   |  http://www.nadf.us

Mission

The National Adrenal Diseases Foundation
informs, educates, and supports those with adrenal disease and their families
to improve their quality of life.

Ruling year info

1990

Executive Director

Ms. Lori Engler

President

Ms. Kalina Warren

Main address

P.O. Box 95149

Newton, MA 02495 USA

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Formerly known as

The National Addison's Diseases Foundation, Inc

EIN

11-2777036

NTEE code info

Single Organization Support (E11)

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

To stop death from undiagnosed adrenal insufficiency (i.e. Addison’s disease). To improve life quality of those who suffer from adrenal disease. To promote the study of adrenal disease to improve treatment and find cures.

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?

Support Group Leader Network

The National Adrenal Diseases Foundation recruits and trains volunteers to become support group leaders across the US. Support group leaders facilitate meetings and events with adrenal disease patients and their families to help them cope with their condition, provide valuable information and help them through a new diagnosis.

Population(s) Served
People with diseases and illnesses

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member 2005

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 support groups offered

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

Age groups, Health, Family relationships

Related Program

Support Group Leader Network

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

OUR MISSION
​The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life.

​OUR GOALS
To stop death from undiagnosed adrenal insufficiency (i.e. Addison’s disease).
To improve life quality of those who suffer from adrenal disease.
To promote the study of adrenal disease to improve treatment and find cures.

​The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life.

Our approach includes a number of actions in each of these categories:
Education
Awareness
Research
Support

NADF's website www.nadf.us provides the education, tools and resources needed for patients with adrenal diseases.
Social Media presence on Twitter, Facebook, Instagram increased our reach to help those with adrenal disease, sharing important information, research and resources
Run a volunteer Support Group Leader Network across the United States, facilitating meetings and events for members, friends and families with adrenal diseases.
Manage and moderate our own virtual support group forum, through NADF/Inspire platform
Provide direct access to Medical advisors who specialize in adrenal diseases for adults and children
Issue a Quarterly Newsletter, specifically written to update the adrenal disease community with education, research, support and a medical Q&A
Manage a patient advocacy service - allows patients, their family or friends to write to us to help newly diagnosed patients and those who just have a question about their condition
Conduct research studies, including a research focused patient registry that will collect information about people with various forms of adrenal insufficiency.
Our partnership with medical professionals to help improve awareness, ultimately saving lives.

Created a new NADF website www.nadf.us; providing the education, tools and resources needed for patients with adrenal diseases;
Increased the level of Social Media presence on Twitter, Facebook, Instagram to reach those with adrenal disease, sharing important information and resources ;
Growing the Support Group Leader network across the United States, increasing our ability to connect with patients and their families, helping them cope with their condition;
Improving participation of our own virtual support group forum, through NADF/Inspire platform;
Created a strong Board of Directors and leadership team, with direct access to Medical advisors who specialize in adrenal diseases for adults and children;
Enhanced NADF's Quarterly Newsletter, specifically written to update the adrenal disease community with education, research, support and a medical Q&A;
Created an excellent patient support program, handled within 24 hours by an NADF expert, with direct access to our medical experts;
Conducting meaningful research studies, including a research focused patient registry that will collect information about people with various forms of adrenal insufficiency.
Increased the level of outreach to adrenal medical professionals via conferences and partnership programs with endocrinology associations.

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?

    Members of The National Adrenal Diseases Foundation are patients, caregivers or other family members of individuals with an adrenal diseases.

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

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls,

  • 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?

    In 2021, created and conducted a presentation for the FDA to discuss the topmost issues impacting those with adrenal diseases. The feedback from patients was critical to the development of the presenation.

  • With whom is the organization sharing feedback?

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

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

    Requesting feedback from members and other patients has helped The National Adrenal Diseases Foundation to prioritize efforts, and to ensure we are providing the support the community needs. We communicate via our website, email, newsletter and social media to ensure timely updates to immediate needs.

  • 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, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

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

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THE NATIONAL ADRENAL DISEASES FOUNDATION INC

Board of directors
as of 11/23/2021
SOURCE: Self-reported by organization
Board co-chair

Ms Kalina Warren

The National Adrenal Diseases Foundation

Term: 2025 - 2012


Board co-chair

Ms Erin Foley

The National Adrenal Disease Foundation

Term: 2020 - 2025

Liz Rodrigues

The National Adrenal Diseases Foundation

Elizabeth Regan

The National Adrenal Diseases Foundation

Holly Jagger

The National Adrenal Diseases Foundation

Gavin Christensen

The National Adrenal Diseases Foundation

Elizabeth Farrell

The National Adrenal Diseases Foundation

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 11/22/2021

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

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Decline to state

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 11/22/2021

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

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 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 help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • 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.