North Carolina · Nonprofit
NATIONAL FABRY DISEASE FOUNDATION
NATIONAL FABRY DISEASE FOUNDATION (North Carolina) receives grants from 8 organizations whose IRS filings report $179,034 to it, the largest being NETWORK FOR GOOD ($136,061). 4 of them have funded it in more than one year, and 80% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $592k
- Funders on record
- 8
- Grants received
- $179k
- Net assets
- $267k
What National Fabry Disease Foundation does
Mission
To ensure that all individuals with fabry disease are identified, diagnosed and provided an opportunity for treatment in time to avoid a diminished quality-of-life and life-threatening consequences; to provide education and awareness to people with fabry disease and their families, to physicians, and to the public; to provide support and assistance to people with fabry disease and their families; and to conduct and promote research to improve management and treatment for fabry disease.
As stated on its FY2025 Form 990.
Programs
Education and awareness: early intervention improves many adverse quality-of-life symptoms and extends patients' life expectancy. Our family and physician education programs help to ensure children and adults with fabry disease are recognized and diagnosed at the earliest age possible to receive appropriate management and treatment of their disease. Our public education program is designed to reach undiagnosed individuals by raising awareness of the symptoms of fabry disease. We provided education and awareness about fabry disease in various forms, such as our robust educational website at www.fabrydisease.org; our annual family education conference; monthly virtual family education meetings (our 50 educational videos), various materials such as an educational fabry symptoms presentation, educational calendar, and a fabry facts educational playing card deck. Frequent educational posts on our facebook page of more than 4,200 followers, periodic tweets on our x page, our periodic fabry focus e-newsletter, and daily assistance via email and phone. We have expanded our social media education campaign with instagram, linkedin, and tiktok. We are in contact with over 1,600 adults with…
$411,089 spentof which $121,900 as grants64% of program spendingCommunity support: the nfdf provides support and assistance to individuals with fabry disease and their families. Our community support program is provided to people with fabry disease and their families. We provided daily phone calls, emails, and written correspondence to support individuals with fabry disease and their families. We provided patients and families with a free 24/7 hotline for counseling and referrals and many innovative resources to help patients/families navigate disease testing, financial management assistance, mental health assistance, and other needs. We purchased many journal articles to share with the community, provided transportation and other assistance to attend fabry educational meetings, provided financial assistance for one-time or short-term needs not covered by other programs, and continued to provide my-health-handbook-kits for emergency situations. We facilitated testing for diagnoses and access to treatment. We continued to add fabry specialists to our find-a-fabry-specialist searchable database on our website.
$227,791 spentof which $17,452 as grants36% of program spending
The 2 programs described on its FY2023 Form 990, listed largest first by expense. Program spending in total: $638,880.
The organization over time
Each line starts at 100 in 2018, so what you read is the shape rather than the size: 150 means half as much again as 2018, 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 2021 to 2022, from $342k to $686k (+100%).
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.
98% of NATIONAL FABRY DISEASE FOUNDATION’s revenue is contributions — more donation-reliant than the typical peer (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 5 of the last 8 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.
Board chair
Gerald Walter
Chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 2 funders to 3 funders, grant income fell $42k → $14k.
3 of 8 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 80% 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 NATIONAL FABRY DISEASE FOUNDATION’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
NATIONAL FABRY DISEASE FOUNDATION leans on a few funders — its largest provides 76% of grant income and the top three 99%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
80% 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 NATIONAL FABRY DISEASE FOUNDATION.
Largest funder’s share by year: 2017 72% · 2018 100% · 2019 100% · 2020 97% · 2021 64% · 2022 98% · 2023 97% — growing more concentrated.
“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
33% of NATIONAL FABRY DISEASE FOUNDATION's funders are still giving 3 years after their first grant; 50% 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
80% of NATIONAL FABRY DISEASE FOUNDATION'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 $36k that is directly attributable, 100% of it comes from funders outside North Carolina, across 5 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $144k arriving through sponsors registered in 3 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
NATIONAL FABRY DISEASE FOUNDATION's revenue grew 16% between 2018 and 2025.
this organization peer median middle 50% of peers· 7,883 health nonprofits $100k–$1M, FY2025
Organizations like NATIONAL FABRY DISEASE FOUNDATION
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 North Carolina
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
94% of spending goes to programs.
Governance
Public support
23%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Screen this organization
A dated, signed PDF of the compliance screen for NATIONAL FABRY DISEASE FOUNDATION: 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 NATIONAL FABRY DISEASE FOUNDATION?
- NATIONAL FABRY DISEASE FOUNDATION (North Carolina) receives grants from 8 organizations whose IRS filings report $179,034 to it, the largest being NETWORK FOR GOOD ($136,061). 4 of them have funded it in more than one year, and 80% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does NATIONAL FABRY DISEASE FOUNDATION have?
- IRS filings report 8 organizations giving $179,034 in grants to NATIONAL FABRY DISEASE FOUNDATION, 4 of which have funded it in more than one year.
- Who is the largest funder of NATIONAL FABRY DISEASE FOUNDATION?
- NETWORK FOR GOOD is the largest funder on record, with $136,061 in grants. The full list of funders is on this page.
- How can an organization like NATIONAL FABRY DISEASE FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in North Carolina. 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 2018–2025), and the filings of 8 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 14, 2026. What this page cannot tell you · view filing