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Filing year 2024

NATIONAL FABRY DISEASE FOUNDATION

Hillsborough, North Carolina·EIN 20-2944028·NTEE G198 · Diseases, Disorders & Medical Disciplines·501(c)(3)
Total revenue
$592k
Total assets
$270k
Total expenses
$739k
Reported officers
7
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.

Executive compensation

Form 990 · Part VII & Schedule J · 2 reported individuals · Filing year 2024

Percentile bands compare each position's total pay with the same role at Diseases, Disorders & Medical Disciplines organizations nationwide.

Chair
Board Chair
Median to 75th percentile
$126k
$134k
Senior Program Manager
Program Manager
25th percentile to medianvs all sectors nationwide
$106k
$113k

Teal figures restate each filed amount in 2026 dollars.

Estimated with BLS CPI-U for the South region, restating filed pay into May 2026 dollars. A restatement of past pay, not current or projected pay.

Plus 5 unpaid individuals.

Browse compensation in Diseases, Disorders & Medical Disciplines

Pay in context

Top pay as a share of expenses

In 2024, the highest total compensation at NATIONAL FABRY DISEASE FOUNDATION equaled 17% of the organization's total expenses. The median for diseases, disorders & medical disciplines organizations is 10%.

This organization (2024)
17%
Sector median
10%
Middle half of sector
4% to 22%

Based on 2,393 diseases, disorders & medical disciplines organizations, each measured at its most recent filing year with reported expenses and compensation.

Funded by

Private foundations whose Form 990-PF Part XV grants matched this organization.

Up 7%
from 2023

From $118k in 2023 to $126k in 2024.

$118k
2023
$126k
2024
In today's dollarsEst.
Up 4% in real terms$129k to $134k

Estimated with BLS CPI-U for the South region, restating filed pay into May 2026 dollars. A restatement of past pay, not current or projected pay.

Pay for the position

Board Chair pay rose 7% from 2023 to 2024, while revenue rose 3%.

$118k in 2023 to $126k in 2024.

Pay for the position itself, not any one person. The officeholder may have changed between 2023 and 2024.

Highest reported compensation in each year. Volunteer board members and partial-year payouts are filtered out.

Among peers

Revenue and top compensation, plotted against similar organizations. This organization is highlighted in cyan.

FAQ

Common questions about NATIONAL FABRY DISEASE FOUNDATION

What does the Board Chair of NATIONAL FABRY DISEASE FOUNDATION earn?

In 2024, the Board Chair of NATIONAL FABRY DISEASE FOUNDATION received $126,174 in total compensation. This pay is above the median (the midpoint) for Board Chair roles among Diseases, Disorders & Medical Disciplines organizations nationwide, within the top half of comparable filings. Based on IRS Form 990 data.

How does Board Chair pay at NATIONAL FABRY DISEASE FOUNDATION compare with similar nonprofits?

Compared with the same role at Diseases, Disorders & Medical Disciplines organizations nationwide, the 2024 pay of the Board Chair at NATIONAL FABRY DISEASE FOUNDATION falls between the median and the 75th percentile. In 2024, the highest total compensation at NATIONAL FABRY DISEASE FOUNDATION equaled 17% of the organization's total expenses. The median for diseases, disorders & medical disciplines organizations is 10%.

What are NATIONAL FABRY DISEASE FOUNDATION's revenue and expenses?

In 2024, NATIONAL FABRY DISEASE FOUNDATION reported $592k in total revenue and $739k in total expenses on its IRS Form 990.

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