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CHARITY REVIEW
Issued: May 2024 Expires: May 2026

National Organization for Rare Disorders

Standards Not Met
Standards Not Met
6 14 16
(617) 249-7300
1900 Crown Colony Drive, Suite 310
Quincy, MA, 02169
https://rarediseases.org
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Standards For Charity Accountability

Governance

  1. Board Oversight
  2. Board Size
  3. Board Meetings
  4. Board Compensation
  5. Conflict of Interest

Measuring Effectiveness

  1. Effectiveness Policy
  2. Effectiveness Report

Finances

  1. Program Expenses
  2. Fundraising Expenses
  3. Accumulating Funds
  4. Audit Report
  5. Detailed Expense Breakdown
  6. Accurate Expense Reporting
  7. Budget Plan

Fundraising & Info

  1. Truthful Materials
  2. Annual Report
  3. Website Disclosures
  4. Donor Privacy
  5. Cause Marketing Disclosures
  6. Complaints

National Organization for Rare Disorders does not meet the following 3 Standards for Charity Accountability:

Standard 6 (Board Policy on Effectiveness)
Have a board policy of assessing, no less than every two years, the organization's performance and effectiveness and of determining future actions required to achieve its mission.

NORD does not meet this Standard because:

  • The organization's effectiveness assessment policy does not specify that this assessment will take place at least once every two years.

Standard 14 (Budget)
Have a board-approved annual budget for its current fiscal year, outlining projected expenses for major program activities, fund raising, and administration.

NORD does not meet this Standard because, when the organization provided 2024 budget information, it indicated that the budget:

  • Did not identify total projected program service expenses.
  • Did not identify total projected fundraising expenses.
  • Did not identify total projected administrative expenses.

Standard 16 (Annual Report)
Have an annual report available to all, on request, that includes: (a) the organization's mission statement, (b) a summary of the past year's program service accomplishments, (c) a roster of the officers and members of the board of directors, (d) financial information that includes (i) total income in the past fiscal year, (ii) expenses in the same program, fund raising and administrative categories as in the financial statements, and (iii) ending net assets.

NORD does not meet this Standard because the 2022 annual report did not include:

  • Total income to match the organization's 2022 audited financial statements.

National Organization for Rare Disorders meets the remaining 17 Standards for Charity Accountability.

Stated Purpose:
"to improve the health and well-being of people with rare diseases by driving advances in care, research, and policy."

Year, State Incorporated:
1983, NY

National Organization for Rare Disorders (NORD) reports that it is a patient advocacy organization that works on behalf of individuals with rare diseases. The organization states that it works with patient organization members to identify, treat, and cure rare disorders through patient services. Patient services include co-pay assistance, drug and medication assistance, emergency relief assistance, and access to specialized medical care.

For the year ended December 31, 2022, National Organization for Rare Disorders's program expenses were:

Program services: $43,146,755

Total Program Expenses: $43,146,755

Chief Executive
Pamela K. Gavin, Chief Executive Officer

Chair of the Board
Kathleen Holcombe

Chair's Profession / Business Affiliation
Senior Advisor, Milken Institute

Board Size
13

Paid Staff Size
93

*Current compensation information not available for Ms. Gavin.

Note: Ms. Gavin became Chief Executive Officer on May 1, 2024. Previous Chief Executive Officer, Peter L. Saltonstall, received $519,022 in compensation in 2022.

Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Direct mail appeals, Radio, Print advertisements

Fundraising costs were 24% of related contributions. (Related contributions, which totaled $8,928,837, are donations received as a result of fundraising activities.)

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.

The following information is based on National Organization for Rare Disorders's audited financial statements for the year ended December 31, 2022.

Source of Funds
Program fees $44,074,839
Drug, travel and lodging program fees $4,967,744
Grants, contributions and bequests $3,861,872
Membership dues $2,560,550
Special events $2,254,534
Registry, web subscriptions and other related fees $1,531,860
Research grants $251,881
Investment return, net $248,962
Total Income $59,752,242

Programs: 89% Fundraising: 4% Administrative: 6%

Total Income $59,752,242
Total expenses: $48,389,398
  Program expenses $43,146,755
  Fundraising expenses $2,141,304
  Administrative expenses $3,101,339
  Other expenses $0
Income in Excess of Expenses $11,362,844
Beginning Net Assets $34,941,697
Other Changes In Net Assets $0
Ending Net Assets $46,304,541
Total Liabilities $3,237,579
Total Assets $49,542,120

An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the International Association of Better Business Bureaus.

This report is not to be used for fundraising or promotional purposes.

RELATED CONTENT

Report completed by:
BBB Wise Giving Alliance