Disease, Disorders, Medical Disciplines

Lupus and Allied Diseases Association, Inc.

We are small but mighty and march among giants!

Verona, NY

Mission

The mission of the Lupus and Allied Diseases Association, Inc. is to advocate for those affected by lupus and allied diseases through awareness and research program initiatives to improve quality of life.

Ruling Year

1980

President & CEO

Ms. Kathleen A Arntsen

Main Address

P.O. Box 170

Verona, NY 13478 USA

Formerly Known As

Lupus Foundation of Mid and Northern New York

Lupus Foundation of America, Marguerite Curri Chapter

Keywords

lupus, patient-led, all-volunteer, advocacy, autoimmune, sle, research, education, awareness, empowerment, patient-focused, access

EIN

16-1083229

 Number

0445159634

Cause Area (NTEE Code)

Alliance/Advocacy Organizations (G01)

Nerve, Muscle and Bone Diseases (G50)

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

IRS Filing Requirement

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

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Social Media

Programs + Results

What we aim to solve

Add a problem overview to your profile.

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Our programs

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

SOURCE: Self-reported by organization

Hope is on the Horizon, Clinical Trial Participation Initiative

The Power of Advocacy: Promoting Participation to Improve Care and Advance Research

Where we work

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of meetings with policymakers or candidates

TOTALS BY YEAR
Population(s) served

General/Unspecified

Related program

The Power of Advocacy: Promoting Participation to Improve Care and Advance Research

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of meetings or briefings held with policymakers or candidates

TOTALS BY YEAR
Population(s) served

General/Unspecified

Related program

The Power of Advocacy: Promoting Participation to Improve Care and Advance Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of new champions or stakeholders recruited

TOTALS BY YEAR
Population(s) served

General/Unspecified

Related program

The Power of Advocacy: Promoting Participation to Improve Care and Advance Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of invitations for advocates to speak as experts

TOTALS BY YEAR
Population(s) served

General/Unspecified

Related program

Hope is on the Horizon, Clinical Trial Participation Initiative

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of individuals attending coalition meetings

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of policy guidelines or proposals developed

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of stakeholders/stakeholder groups with whom communication has been achieved and expectations shared

TOTALS BY YEAR
Population(s) served

General/Unspecified

Related program

Hope is on the Horizon, Clinical Trial Participation Initiative

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of organizations signing onto policy guidelines or proposals

TOTALS BY YEAR
Population(s) served

General/Unspecified

Related program

The Power of Advocacy: Promoting Participation to Improve Care and Advance Research

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of government officials who publicly support the advocacy effort

TOTALS BY YEAR
Population(s) served

General/Unspecified

Related program

The Power of Advocacy: Promoting Participation to Improve Care and Advance Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

(a) to coordinate and support research and education in the field of lupus and allied diseases with the goal of establishing more effective treatments that are accessible to those suffering from lupus and allied diseases.
(b) to promote the exchange of knowledge about lupus and allied diseases concerning the symptomology, diagnostic methods, treatments, prevention, pathogenesis and cure.
(c) to collaborate with various health organizations such as patient advocacy organizations, professional societies, government entities, and other interested stakeholders in the promotion of lupus and allied diseases program initiatives.
(d) to support biomedical research programs for lupus and allied diseases.
(e) to raise, disburse and administer funds in order to accomplish the aforementioned purposes.

The Lupus and Allied Diseases Association, Inc., believes it is critical for all healthcare stakeholders to collaborate on advocacy and research initiatives. We are very active on both the state and national level regarding health care reform and access issues that impact those affected by lupus including: the biosimilars regulatory process, protecting entitlement programs, providing stronger patient protections, promoting patient-centric research. Our programs are designed to empower individuals to actively participate in their own health care and to also become engaged in the public policy process in order to influence positive change and enhance their quality of life. Lupus and Allied Diseases Association, Inc. provides Public Education, Advocacy and Awareness programs, collaborates with other interested partners to serve the needs of the lupus and unmet disease communities, and provides representation regarding important lupus-related issues at local and national advocacy events.

Lupus and Allied Diseases Association, Inc. addresses access to care issues as they arise, often taking the lead to organize grassroots efforts within the state or nation. We are a prime advocacy group in NYS and have helped to coalesce over 75 patient and professional groups to unite on these important matters. We have also supported access issues in various states and have led and collaborated on national initiatives. We submitted comments on the 21st Century Cures and Senate Healthier Americans Initiative and led the effort for the lupus community to collaborate on the FDA Patient-Focused Drug Development Initiative. We remain committed to ensuring the Biosimilars regulatory pathway recognizes the complexities of autoimmune patients and products are safe, efficacious and have distinguishable non-proprietary names.

By the number of laws passed that we advocated for and supported.
By the increase in lupus research grants, programs and breakthroughs.
Through the implementation of the NIH Future Directions of Lupus Research and the CDC Public Health Agenda for Lupus initiatives.
By the FDA using the Benefit-Risk Framework developed from the Lupus Patient-Focused Drug Development Initiative to advance new therapies.

We have supported $864,000.00 in 19 years in lupus research funding. We have helped to pass legislation that increases lupus and other disease research funding. We have helped to pass legislation that improves patient access to medical care and critical treatments both federally and in various states. We have helped to increase lupus awareness through the CDC Public Health Agenda and the Annual NYS Lupus Awareness Event. We co-lead an Externally-led Lupus Patient-Focused Drug Development (PFDD) Initiative.

External Reviews

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Financials

Lupus and Allied Diseases Association, Inc.

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Operations

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

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FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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 & 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

Who works and leads organizations that serve our diverse communities? This organization has voluntarily shared information to answer this important question and to support sector-wide learning. GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

SOURCE: Self-reported; last updated 04/23/2020

Leadership

The organization's leader identifies as:

Race & Ethnicity
White/Caucasian/European
Gender Identity
Female
Sexual Orientation
Decline to state
Disability Status
Person with a disability

Race & Ethnicity

Gender Identity

No data

Sexual Orientation

No data

Disability

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

Equity Strategies

Last updated: 04/23/2020

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

Data

done
We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.

Policies and processes

done
We have community representation at the board level, either on the board itself or through a community advisory board.