Massachusetts · Nonprofit
AMYLOIDOSIS RESEARCH CONSORTIUM INC
AMYLOIDOSIS RESEARCH CONSORTIUM INC (Massachusetts) receives grants from 12 organizations whose IRS filings report $552,310 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($285,350). 8 of them have funded it in more than one year, and 67% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $3.8M
- Funders on record
- 12
- Grants received
- $552k
- Net assets
- $3.1M
What Amyloidosis Research Consortium Inc does
Mission
Accelerating the development of advanced diagnostic tools and effective treatments for systemic amyloidosis through collaboration and innovation.
As stated on its FY2025 Form 990.
Programs
Research programs:arc has been working on a number of research initiatives including datasharing, and patient experience studies. Arc has also developed an appointment companion tool that supports patients throughout their treatment journey. The anonymized aggregated data provides valuable real world incites. Arc is developing a patient reported outcomes tool for use in clinical practice.
$589,943 spent$52,140 earned by the program21% of program spendingAwareness, educational programs and advocacy:arc's patient and healthcare professional programs educate physicians and tailor information to suit the patient's needs and are successfully matching them to better treatment centers, care, and clinical trials. Arc's patient advisory board are instrumental in defining and prioritizing arc's patient programs. Arc's patient support specialist provides information and guidance for patients throughout their journey. Arc also maintains a comprehensive website with the latest information and news about amyloidosis. Arc's unique amyloidosis pathfinder tool supports patients in finding and evaluating treatment centers and matching them with clinical trials. This tool has been further enhanced to support patients with telehealth visits and virtual care during the pandemic. Arc also hosts arc talks, a regular patient educational webinar series covering a range of important topics. Arc has developed booklets, and handouts to provide patients with in depth information on amyloidosis related topics.
$714,179 spent25% of program spendingHealthcare professional education:arc has carried out research to understand the barriers and pathways to early diagnosis. From this research, arc developed and implement targeted solutions. Arc raises awareness and provides physician education on the signs, symptoms, and care of amyloidosis to raise the level of suspicion, improve the speed of diagnosis, and standards of care. Arc held a masterclass for physicians and nurses in dallas, tx focused on addressing the challenges of accurate diagnosis and managing care. Arc has published peer reviewed consensus guidelines defining pathway for suspicion and diagnosis with a focus on cardiology and general practice. Arc sponsored a satellite symposium at the hfsa conference on the diagnosis and treatment of cardiac amyloidosis.
$570,861 spent20% of program spendingOther program services, not described on the e-filed return.
$987,595 spentof which $532,500 as grants35% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $2,862,578.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2023 to 2024, from $3.0M to $4.7M (+57%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2020 6% · 2021 7%. Grants only. Government contracts and fees sit inside program revenue.
94% of AMYLOIDOSIS RESEARCH CONSORTIUM INC’s revenue is contributions — more reliant on donations than three-quarters of its peers (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 3 of the last 9 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Isabelle Lousada
President/CEO & clerk
Board chair
Sarah Cairns-Smith
Chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 1 funder to 7 funders, grant income rose $25k → $57k.
6 of 12 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 67% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of AMYLOIDOSIS RESEARCH CONSORTIUM INC’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
AMYLOIDOSIS RESEARCH CONSORTIUM INC leans on a few funders — its largest provides 52% of grant income and the top three 86%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
94% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund AMYLOIDOSIS RESEARCH CONSORTIUM INC.
Largest funder’s share by year: 2017 100% · 2018 98% · 2019 100% · 2020 92% · 2021 73% · 2022 34% · 2023 44% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
80% of AMYLOIDOSIS RESEARCH CONSORTIUM INC's funders are still giving 3 years after their first grant; 67% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
67% of AMYLOIDOSIS RESEARCH CONSORTIUM INC's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $182k that is directly attributable, 86% of it comes from funders outside Massachusetts, across 6 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $370k arriving through sponsors registered in 6 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
AMYLOIDOSIS RESEARCH CONSORTIUM INC has grown faster than half of the 5,002 health nonprofits its size.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Government funding AMYLOIDOSIS RESEARCH CONSORTIUM INC receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $114k on record.
- Department of Health and Human Services$114k
Federal grants vs contracts are distinguished; state line items keep their reported category. Matched by name + geography (the BMF), so coverage is partial and precision-first.
Organizations like AMYLOIDOSIS RESEARCH CONSORTIUM INC
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Massachusetts
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
75% of spending goes to programs.
Governance
Public support
62%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 4 states
Screen this organization
A dated, signed PDF of the compliance screen for AMYLOIDOSIS RESEARCH CONSORTIUM INC: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds AMYLOIDOSIS RESEARCH CONSORTIUM INC?
- AMYLOIDOSIS RESEARCH CONSORTIUM INC (Massachusetts) receives grants from 12 organizations whose IRS filings report $552,310 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($285,350). 8 of them have funded it in more than one year, and 67% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does AMYLOIDOSIS RESEARCH CONSORTIUM INC have?
- IRS filings report 12 organizations giving $552,310 in grants to AMYLOIDOSIS RESEARCH CONSORTIUM INC, 8 of which have funded it in more than one year.
- Who is the largest funder of AMYLOIDOSIS RESEARCH CONSORTIUM INC?
- FIDELITY INVESTMENTS CHARITABLE GIFT FUND is the largest funder on record, with $285,350 in grants. The full list of funders is on this page.
- How can an organization like AMYLOIDOSIS RESEARCH CONSORTIUM INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Massachusetts. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 12 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing