Your donation attempt encountered a problem. Please refresh the page to try again.
You're faster than our page! Give the page a little longer to finish loading and try your donation again.
Newton MA | IRS ruling year: 2015 | EIN: 47-2589708
Organization Mission
The Amyloidosis Research Consortium (ARC) is a nonprofit organization dedicated to driving advances in the awareness, science, and treatment of amyloid diseases. ARC ... (More)
The Amyloidosis Research Consortium (ARC) is a nonprofit organization dedicated to driving advances in the awareness, science, and treatment of amyloid diseases. ARC’s mission is to improve and extend the lives of those with amyloidosis. ARC is committed to collaborative efforts that accelerate the pace of discovery, expand patient access to the most effective care, and improve short- and long-term outcomes. Working with partners in industry, government, and academia, ARC seeks to spark innovation and to bring promising treatments from labs to clinics. ARC’s outreach and education inform and empower patients, families, caregivers, physicians, and researchers. (Less)
Great
This charity's score is 95%, earning it a Four-Star rating. If this organization aligns with your passions and values, you can give with confidence.
This overall score is calculated from multiple beacon scores, weighted as follows: 80% Accountability & Finance, 10% Leadership & Adaptability, 10% Culture & Community. Learn more about our criteria and methodology.
We recognize that not all metrics and beacons equally predict a charity’s success. The percentage each beacon contributes to the organization’s overall rating depends on the number of beacons an organization has earned.
Use the tool below to select different beacons to see how the weighting shifts when only one, two, or three beacons are earned.
Rating histories are available for a growing number of rated organizations. Check back later to see if this organization has a rating history!
Score
Most Recent Fiscal Year:
FY 2021
This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.
Learn more
Full Credit
Partial Credit
No CreditMajority Independent Board Members - 66% independent members8 out of 8 points Majority Independent Board Members - 66% independent members8 out of 8 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. We check to see if at least 50% of board members are indentified as independent on their tax form.
Source: IRS Form 990
Independent Board Size - 4 independent members7 out of 7 points Independent Board Size - 4 independent members7 out of 7 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. For most organizations, we check to see if the organization has at least three board members. For large, donor-funded organizations, we check to see if the organization has at least five independent board members
Source: IRS Form 990
Independent Audit or Financial Review - Yes15 out of 15 points Independent Audit or Financial Review - Yes15 out of 15 points
An Audit, Review, or Compilation provides important information about financial accountability and accuracy. Organizations are scored based on their Total Revenue Amount:
| Total Revenue Amount | Expectation to Receive Credit |
| $2 million or higher and 40% or higher donor support | Expected to complete an audit and have an audit oversight committee |
| $1 million or higher | Expected to complete an audit |
| $500,000 - $1 million | Expected to complete an audit, review, or compilation |
| Less than $500,000 | No expectation (removed from scoring methodology) |
Source: IRS Form 990
Material Diversion of Assets - None10 out of 10 points Material Diversion of Assets - None10 out of 10 points
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 — also can seriously call into question a charity's financial integrity. We review the charity's most recent IRS Form 990 to see if the charity has reported any diversion of assets.
Source: IRS Form 990
Full CreditPartial CreditNo CreditWebsite Listed on Tax Form - Listed2 out of 2 points Website Listed on Tax Form - Listed2 out of 2 points
Charity Navigator looks for a website on the IRS Form 990 as an accountability and transparency metric.
Nonprofits act in the public trust and reporting publicly on activities is an important component.
Source: IRS Form 990
Conflict of Interest Policy - Listed4 out of 4 points Conflict of Interest Policy - Listed4 out of 4 points
Charity Navigator looks for the existence of a conflict of interest policy on the IRS Form 990 as an accountability and transparency measure.
This policy protects the organization and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer, director and/or key employee of the organization.
Source: IRS Form 990
Whistleblower Policy - Listed4 out of 4 points Whistleblower Policy - Listed4 out of 4 points
Charity Navigator looks for the existence of a whistleblower policy per the IRS Form 990 as an accountability and transparency measure.
This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report financial or other types of mismanagement.
Source: IRS Form 990
Document Retention and Destruction - Listed4 out of 4 points Document Retention and Destruction - Listed4 out of 4 points
Charity Navigator looks for the existence of a document retention and destruction policy per the IRS Form 990 as an accountability and transparency measure.
This policy establishes guidelines for the handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promote data integrity.
Source: IRS Form 990
Documents Board Meeting Minutes - Yes2 out of 2 points Documents Board Meeting Minutes - Yes2 out of 2 points
Charity Navigator looks to confirm on the IRS Form 990 that the organization has this process in place as an accountability and transparency measure.
An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference.
Source: IRS Form 990
Full CreditPartial CreditNo CreditTax Form Posted on Nonprofit's Website - Missing0 out of 4 points Tax Form Posted on Nonprofit's Website - Missing0 out of 4 points
For almost all charities, we check the charity's IRS Form 990 to see if it discloses that the Form 990 is available on the charity's website. As with the audited financial statement, donors need easy access to this financial report to help determine if the organization is managing its financial resources well.
Source: IRS Form 990
Full CreditPartial CreditNo CreditLiabilities to Assets: Ratio - 6.59%15 out of 15 points Liabilities to Assets: Ratio - 6.59%15 out of 15 points
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent IRS Form 990). This ratio is an indicator of an organization's solvency and/or long-term sustainability.
Source: IRS Form 990
Program Expense: Ratio - 82.53%25 out of 25 points Program Expense: Ratio - 82.53%25 out of 25 points
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three IRS Forms 990). This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver.
Source: IRS Form 990
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
No Data Available
Salary data is coming soon.
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
Foundation Status:
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)
Affiliation:
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 search for this organization's Forms 990 on the IRS website (if any are available). Simply enter the organization's name (Amyloidosis Research Consortium Inc.) or EIN (472589708) in the 'Search Term' field.
Not Currently Scored
Amyloidosis Research Consortium Inc. cannot currently be evaluated by our 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.
Score
This beacon provides an assessment of the organization's culture and connectedness to the community it serves.
Learn more
Full CreditPartial CreditNo CreditConstituent Feedback - No Data AvailableUnscored Constituent Feedback - No Data AvailableUnscored
This organization reported that it is collecting feedback from the constituents and/or communities it serves. The methodology leveraged for Constituent Feedback is based on The Core Principles of Constituent Feedback, which describes listening and responding well to feedback. Charity Navigator participates in a consortium with other feedback experts and leading nonprofit infrastructure platforms to drive Constituent Feedback's advancement, promotion, and data collection.
How is your organization collecting feedback from the people you serve?
Focus groups or interviews (by phone or in person), Paper surveys, Constituent (client or resident, etc.) advisory committees
How is your organization using feedback from the people you serve?
To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve
With whom does your organization share the feedback you got from the people you serve?
Our staff, Our board
What challenges does your organization face in collecting feedback from the people you serve?
Note: The organization reported no challenges faced.
Briefly describe a recent change that your organization made in response to feedback from the people you serve.
Note: The organization did not respond to this question.
Equity Practices - Data Available83/100 points Equity Practices - Data Available83/100 points
100% of beacon score
This organization's score of 83 is a passing score. The organization reported that it is implementing 6 Equity Practices.
This assessment demonstrates the importance of implementing practices that contribute positively to an organization's overall culture, both internally and with respect to community engagement. Furthermore, equity centered frameworks and similar approaches have drawn much attention from donors, experts, and sector leaders who underscore its value to the nonprofit's overall health and capacity for mission success. Currently, the Equity Strategies Checklist assessment consists of practices and policies that promote racial equity in their operations and programs (per the Equity Strategies checklist administered by Candid). As we refine our DEI assessment, Charity Navigator partners with DEI consultants and field experts to broaden and deepen this work.
| Equity Practices (3/7) | |
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 analyze disaggregated data and root causes of race disparities that impact the organization/'s programs, portfolios, and the populations served. | |
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 disaggregate data by demographics, including race, in every policy and program measured | |
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. | |
| Equity Policies and Procedures (3/7) | |
We use a vetting process to identify vendors and partners that share our commitment to race equity. | |
We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions. | |
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 measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team. | |
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. | |
Score
This beacon 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.
Learn more
Full CreditPartial CreditNo CreditMission 10/10 points Mission 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
The Amyloidosis Research Consortium (ARC) is a nonprofit organization dedicated to driving advances in the awareness, science, and treatment of amyloid diseases. ARC’s mission is to improve and extend the lives of those with amyloidosis. ARC is committed to collaborative efforts that accelerate the pace of discovery, expand patient access to the most effective care, and improve short- and long-term outcomes. Working with partners in industry, government, and academia, ARC seeks to spark innovation and to bring promising treatments from labs to clinics. ARC’s outreach and education inform and empower patients, families, caregivers, physicians, and researchers.
Vision 10/10 points Vision 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
A cure for all types of amyloidosis
Source: Nonprofit submitted responses
Goals 20/20 points Goals 20/20 points
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Improve the speed and accuracy of diagnosis
Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.
Goal Two: Increase our understanding of the genetics, biology and natural history of amyloidosis to identify new treatments
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Leadership Development 15/15 points Leadership Development 15/15 points
The nonprofit provides evidence of investment in leadership development
Describe an investment in leadership
Leadership team members have participated in educational and training opportunities to build their skills, including workshops at Harvard Public School of Health
Mobilizing for Mission 15/15 points Mobilizing for Mission 15/15 points
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
This organization mobilizes for mission in the following ways:
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Community Building
Policy Advocacy
What are this organization’s external mobilizaton efforts?
Members of the ARC leadership team serve in different capacities on a number of working groups, board and think tanks across the rare disease space. They frequently share the learnings and achievements, vision, goals and strategy of the organization at key meetings and with thought leaders and policy makers across many fields including academia, industry, policy, regulatory and patient advocacy. organizations
Adaptability Story 30/30 points Adaptability Story 30/30 points
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
As COVID took hold, ARC was able to pivot and grow a key program. This was a public-private partnership established with the U.S Food and Drug Administration (FDA) to accelerate drug development and was designed to be held at the FDA in Bethesda, MD. We revised the structure, by using virtual platforms we were able to grow the program significantly, to have a global reach, and create working groups that met regularly and were highly productive.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
The Giving Basket is having some issues. If you wish to donate, please refresh the page. If the problem persists contact us.
Cart ID: Not Assigned
The Giving Basket is having some issues. If you wish to donate, please refresh the page. If the problem persists contact us.
Cart ID: Not Assigned
