Lupus and Allied Diseases Association, Inc.
We are small but mighty and march among giants!
Programs and results
What we aim to solve
Lupus is considered a disease of unmet medical needs due to lack of efficient diagnostic tools, effective therapies, and well-designed clinical trials. Lupus clinical research and thus drug development, has been unsuccessful due to the diversity of the patient population, unpredictable relapsing and remitting course of the symptoms, absence of reliable biomarkers, heterogeneity of the disease, limitations of clinical outcome measures and non-existent uniform control groups.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Hope is on the Horizon, Clinical Trial Participation Initiative
Interactive educational program giving an overview of clinical research trials and their importance in furthering research and development for diseases of unmet need.
The Power of Advocacy: Promoting Participation to Improve Care and Advance Research
An interactive presentation designed to empower people to become proactive in their health care and become engaged in the public policy process and research.
Where we work
External reviews

Photos
Videos
Our results
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
Adults
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
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
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
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
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
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
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
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Number of policy guidelines or proposals developed
This metric is no longer tracked.Totals By Year
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
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
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
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
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
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
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
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
(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.
What are the organization's key strategies for making this happen?
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 and across the research continuum 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. We also provide patient and care partner experts to participate in research, policy, regulatory and advocacy initiatives to bring our unique perspective to the dialogue.
What are the organization's capabilities for doing this?
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 and an ICER Lupus Drug Review. 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.
What have they accomplished so far and what's next?
We have supported $1,848,324.00 since 1990 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 and World Lupus Day Initiative.
We co-led an Externally-led Lupus Patient-Focused Drug Development (PFDD) Initiative.
Advancing research to identify better diagnostic tools, discover more effective treatments with less toxicity and ultimately, cures to improve patient quality of life.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To inform the development of new programs/projects, To strengthen relationships with the people we serve
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Which of the following feedback practices does your organization routinely carry out?
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What challenges does the organization face when collecting feedback?
We don’t have the right technology to collect and aggregate feedback efficiently, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Connect with nonprofit leaders
SubscribeBuild 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.
Lupus and Allied Diseases Association, Inc.
Board of directorsas of 02/23/2023
Mr. David Arntsen
Lupus and Allied Diseases Association, Inc.
Term: 2023 - 2026
Sandra M Frear
Retired
Kathleen A. Arntsen
Retired
Philip A. Teague
Teague Accounting Experts
David L. Arntsen
Educational Consultant
Jacqueline L. Taylor
CNA, Lutheran Homes
Jane M. Porter
Retired, US House of Representatives Staff
Lisabeth S. Iglesias
Retired
Brian J. Vogel
CNY DSO
Lori A. Vogel
Retired CNY DSO/OPWDD
Anne M. Zabolotowicz
Retired
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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
Gender identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.
Equity strategies
Last updated: 08/31/2020GuideStar 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
- We ask team members to identify racial disparities in their programs and / or portfolios.
- 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 use a vetting process to identify vendors and partners that share our commitment to race equity.
- 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.
- 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.