Mission: The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histio ... (More)
Histiocytosis Association is a 501(c)(3) organization, with an IRS ruling year of 1988, and donations are tax-deductible.
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Contact Information
332 North Broadway
332 North Broadway
Pitman NJ 08071
Charity Navigator evaluates a nonprofit organization’s financial health including measures of stability, efficiency and sustainability. We also track accountability and transparency policies to ensure the good governance and integrity of the organization.
This charity's score is 91.16, earning it a 4-Star rating. Donors can "Give with Confidence" to this charity.
This score is calculated from two sub-scores:
Finance: 87.50 View details
Accountability & Transparency: 100.00 View details
This score represents Form 990 data from 2019, the latest year published by the IRS.
View this organization’s historical ratings.
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The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s).
This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).
Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.
Source: IRS Form 990
The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.
Source: IRS Form 990
Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.
Source: IRS Form 990
We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.
Source: IRS Form 990
Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.
Sources Include: IRS Form 990
Governance: | |
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Independent Voting Board Members ... (More) | |
No Material Diversion of Assets ... (More) A diversion of assets – any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft – can seriously call into question a charity's financial integrity. We check the charity's last two Forms 990 to see if the charity has reported any diversion of assets. If the charity does report a diversion, then we check to see if it complied with the Form 990 instructions by describing what happened and its corrective action. This metric will be assigned to one of the following categories:
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Audited Financials Prepared by Independent Accountant ... (More) Audited financial statements provide important information about financial accountability and accuracy. They should be prepared by an independent accountant with oversight from an audit committee. (It is not necessary that the audit committee be a separate committee. Often at smaller charities, it falls within the responsibilities of the finance committee or the executive committee.) The committee provides an important oversight layer between the management of the organization, which is responsible for the financial information reported, and the independent accountant, who reviews the financials and issues an opinion based on its findings. We check the charity's Form 990 reporting to see if it meets this criteria.
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Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties ... (More) | |
Documents Board Meeting Minutes ... (More) | |
Distributes 990 to Board Before Filing ... (More) | |
Compensates Board ... (More) |
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.
Sources Include: IRS Form 990 and organization's website
Policies: | |
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Conflict of Interest ... (More) | |
Whistleblower ... (More) | |
Records Retention and Destruction ... (More) | |
CEO Compensation Process ... (More) | |
Donor Privacy ... (More) Donors can be reluctant to contribute to a charity when their name, address, or other basic information may become part of donor lists that are exchanged or sold, resulting in an influx of charitable solicitations from other organizations. Our analysts check the charity's website to see if the organization has a donor privacy policy in place and what it does and does not cover. Privacy policies are assigned to one of the following categories:
The privacy policy must be specific to donor information. A general website policy which references "visitor" or "user" personal information will not suffice. A policy that refers to donor information collected on the website is also not sufficient as the policy must be comprehensive and applicable to both online and offline donors. The existence of a privacy policy of any type does not prohibit the charity itself from contacting the donor for informational, educational, or solicitation purposes. (Less) |
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.
Sources Include: IRS Form 990 and organization's website
Transparency: | |
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CEO Salary Listed on 990 ... (More) | |
Board of Directors Listed on Website ... (More) | |
Key Staff Listed on Website ... (More) | |
Audited Financial Statements on Website ... (More) | |
Form 990 Available on Website ... (More) |
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This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
Presented here are this organizations key compensated staff members as identified by our analysts. This compensation data includes salary, cash bonuses and expense accounts and is displayed exactly how it is reported to the IRS. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting
Current CEO and Board Chair can be found in the Leadership & Adaptability report below.
Source: IRS Form 990 (page 7), filing year 2019
Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website
Scientific research (diseases) (BMF activity code: 161)
Organization which receives a substantial part of its support from a governmental unit or the general public 170(b)(1)(A)(vi) (BMF foundation code: 15)
Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).
Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them. Charities may submit their own pandemic responses through their nonprofit portal.
Program Delivery
Fundraising Capacity
Grants Sent
Donations to our organization declined by more than 20%. We also applied and received the PPP loan, to be able to retain our full team.
Due to social distancing we had to transition our in person meetings and events to virtual. Some of our events were postponed or canceled. Our Annual Research program was halted in 2020 due to the fact that many labs were closed. We allocated funds received in 2020 to our 2021 Research Program in support of the most robust grant funding possible.
We shifted our resources to increase virtual educational opportunities, launched events to bring the community together in a virtual environment, and enhanced our website to bring forward more online resources. We also partnered with other organizations across the US and around the world to stand together for histiocytosis patients, families, and caregivers as well as to increase opportunities for educational and emotional support.
Our virtual educational opportunities will continue into the future; we have seen the impact they have on bringing important information to patients around the world.
This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.
Histiocytosis Association cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Do you work at Histiocytosis Association? Join the waitlist for an updated Impact & Results score.
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Histiocytosis Association reported its two largest programs on its FY 2019 Form 990 as:
Spent in most recent FY
Percent of program expenses
Research Initiatives
Spent in most recent FY
Percent of program expenses
Education and Outreach
This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.
out of 100
The score earned by Histiocytosis Association is a passing score. This score has no effect on the organization's Star Rating.
Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s mission
HISTIOCYTOSIS ASSOCIATION, INC. IS DEDICATED TO RAISING AWARENESS ABOUT HISTIOCYTIC DISORDERS, PROVIDING EDUCATION AND EMOTIONAL SUPPORT, AND FUNDING RESEARCH LEADING TO BETTER TREATMENTS AND A CURE.
Source: Nonprofit submitted responses
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
To one day see a world free of histiocytic disorders.
Source: Nonprofit submitted responses
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Provide robust and accurate educational information about all histiocytic disorders and to bridge the medical and patient community by sharing research progress and to bring the patient voice forward.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Goal Two: To raise awareness around the world of histiocytosis to improve patient outcomes, patient resources, and early diagnosis.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Goal Three: To build out additional resources for our community in various modalities including virtual, in person, and digital while expanding the emotional support we provide to all those impacted.
Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.
Source: Nonprofit submitted responses
The nonprofit provides evidence of investment in leadership development
Received training on teambuilding, attended workshops and classes for fundraising, attended World Orphan Drug Congress, participate in various working groups and panels.
Source: Nonprofit submitted responses
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
Strategic Partnerships
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Policy Advocacy
We work with the EveryLife Foundation working groups for Public Policy, Regulatory, and COVID-19 and our Executive Director was appointed to PCORI's Advisory Panel on Rare Disease. In 2021 we launched a Podcast to help raise awareness of our mission and cause, in addition to partnering with local universities, businesses, and radio station to bring local awareness. Our social media seeks to reach a global audience and we often partner with other organizations/programs including NORD, NIH, Global Genes, Pituitary World News, Be the Match, and Jason Carter Clinical Trials, as well as other Patient Advocacy Groups for histiocytosis.
Source: Nonprofit submitted responses
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
As the need for more virtual support increased, our organization adapted by developing a new website to expand accessibility of our resources. We hosted educational webinars with leading medical professionals and shifted peer to peer events from in person to virtual. In the spring of 2021, we launched a podcast to bring a new conversation to the histiocytosis community. We have also continued to experience the value of partnership with other organizations and have sought to work together more frequently for the benefit of histiocytosis patients, caregivers, family members, and the medical professionals and scientists who are dedicated to improving the lives and treatments of those impacted.
Source: Nonprofit submitted responses
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Executive Director
Chairwoman
This score provides an assessment of the organization's culture and connectedness to the community it serves. Learn more about how and why we rate Culture & Community.
out of 100
Histiocytosis Association has earned a passing score. This score has no effect on the organization's Star Rating. The organization provided data about how it listens to constituents (Constituent Feedback) (see report below).
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This organization reported that it is collecting feedback.
Here's how this organization is listening and learning from the people it serves:
Patients, family members, caregivers, physicians, and other healthcare professionals who are impacted by or treat histiocytosis / histiocytic disorders and related conditions.
Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person)
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
The people we serve, Our staff, Our board, Our funders, Our community partners
We don't have any major challenges to collecting feedback
Although the founder of the Association is well respected feedback led to the conclusion that a new, vibrant leader would benefit the Association. As a result, after an exhaustive search a new Executive Director was hired.
Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective. We've partnered with Candid to survey organizations about their feedback practices. Nonprofit organizations can fill out the How We Listen section of their Candid profile to receive a rating.
Learn more about the methodology.
Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Our partnership with Feedback Labs and Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.
Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.
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