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Filing year 2024

NATIONAL ORGANIZATION FOR RARE DISORDERS INC

Quincy, Massachusetts·EIN 13-3223946·501(c)(3)
Total revenue
$50.7M
Total assets
$72.3M
Total expenses
$43M
Reported officers
21
Mission

NORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY.

Executive compensation, broken down

Form 990 · Part VII & Schedule J · 9 reported individuals · Filing year 2024

Percentile bands compare each position's total pay with the same role at nonprofits nationwide, across all sectors.

EVP (until 5/24)/ceo (as of 5/24)
Executive Vice President
75th to 90th percentile
$475k
$508k
Base
$417k
Bonus
$25k
Other
Benefits
$16k
CEO (until 5/24)/ceo Emeritus (as of 5/24)
Above 90th percentile
$399k
$426k
Base
$349k
Bonus
$25k
Other
Benefits
$7k
Chief Medical & Scientific Officer
Highest Compensated Employee
75th to 90th percentile
$332k
$355k
Base
$271k
Bonus
Other
Benefits
$47k
VP Information Technology
Board Vice President
75th to 90th percentile
$298k
$318k
Base
$283k
Bonus
Other
Benefits
$417
VP Community & Corporate Affairs
Board Vice President
75th to 90th percentile
$266k
$283k
Base
$207k
Bonus
Other
Benefits
$47k
VP of Development
Board Vice President
75th to 90th percentile
$258k
$275k
Base
$226k
Bonus
$20k
Other
Benefits
VP & CFO
75th to 90th percentile
$222k
$237k
Base
$180k
Bonus
Other
Benefits
$33k
VP Patient Services
Board Vice President
Median to 75th percentile
$208k
$222k
Base
$182k
Bonus
Other
Benefits
$16k
Chief Strategy & Operations Officer
Officer (Unspecified)
$77k
$83k

Teal figures restate each filed amount in 2026 dollars.

Estimated with Boston-Cambridge-Newton, MA-NH metro-area CPI-U, restating filed pay into May 2026 dollars. A restatement of past pay, not current or projected pay.

Plus 12 unpaid individuals.

Funded by

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

Down 9%
from 2023

From $523k in 2023 to $475k in 2024.

$523k
2023
$475k
2024
In today's dollarsEst.
Down 12% in real terms$576k to $508k

Estimated with Boston-Cambridge-Newton, MA-NH metro-area CPI-U, restating filed pay into May 2026 dollars. A restatement of past pay, not current or projected pay.

Pay for the position

Executive Vice President pay rose 12% from 2023 to 2024, while revenue fell 24%.

$423k in 2023 to $475k in 2024.
  • Chief Executive Officer pay fell 24% from 2023 to 2024.
  • Highest Compensated Employee pay rose 1% from 2023 to 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.
Financial trend

Revenue and expenses over time

NATIONAL ORGANIZATION FOR RARE DISORDERS INC reported revenue and expenses across 2 filing years.

RevenueExpenses
$66.4M
$52.8M
2023
$50.7M
$43M
2024
Total revenue and total expenses from IRS Form 990 filings.
FAQ

Common questions about NATIONAL ORGANIZATION FOR RARE DISORDERS INC

What does the Executive Vice President of NATIONAL ORGANIZATION FOR RARE DISORDERS INC earn?

In 2024, the Executive Vice President of NATIONAL ORGANIZATION FOR RARE DISORDERS INC received $475,492 in total compensation. This pay is in the top quarter for Executive Vice President roles among nonprofits nationwide, across all sectors, though not the top 10% of comparable filings. Based on IRS Form 990 data.

How does Executive Vice President pay at NATIONAL ORGANIZATION FOR RARE DISORDERS INC compare with similar nonprofits?

Compared with the same role at nonprofits nationwide, across all sectors, the 2024 pay of the Executive Vice President at NATIONAL ORGANIZATION FOR RARE DISORDERS INC falls between the 75th and 90th percentiles.

What are NATIONAL ORGANIZATION FOR RARE DISORDERS INC's revenue and expenses?

In 2024, NATIONAL ORGANIZATION FOR RARE DISORDERS INC reported $50.7M in total revenue and $43M in total expenses on its IRS Form 990.

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