National Organization for Rare Disorders meets the 20 Standards for Charity Accountability.
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, 2020, National Organization for Rare Disorders's program expenses were:
Program services |
$48,138,113 |
Total Program Expenses: |
$48,138,113 |
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Chief Executive
Peter L. Saltonstall, President and Chief Executive Officer
-
Compensation*
$528,714
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Chair of the Board
Kathleen Holcombe
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Chair's Profession / Business Affiliation
Senior Advisor, Milken Institute
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Board Size
13
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Paid Staff Size
88
*2020 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Invitations to fund raising events, Membership appeals, Planned giving arrangements, Print advertisements (newspapers, magazines, etc.)
Fundraising costs were 31% of related contributions. (Related contributions, which totaled $6,022,904, 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, 2020.
Source of Funds |
Grants, contributions, and bequests |
$4,122,303 |
Special events revenue |
$1,900,601 |
Registry, web subscriptions, and other related fees |
$395,674 |
Patient services program fees |
$345,353 |
Interest and dividend income, net |
$328,049 |
Drug, travel, and lodging program administrative fees |
$67,425 |
Total Income |
$7,159,405 |
- Programs: 92%
- Administrative: 5%
- Fundraising: 3%
Total Income |
$7,159,405 |
Program expenses |
$48,138,113 |
Fundraising expenses |
$1,842,510 |
Administrative expenses |
$2,807,836 |
Other expenses |
$0 |
Total expenses: |
$52,788,459 |
Income in Excess of Expenses |
$-45,629,054 |
Beginning Net Assets |
$59,419,323 |
Other Changes In Net Assets |
$0 |
Ending Net Assets |
$49,567,652 |
Total Liabilities |
$3,206,888 |
Total Assets |
$52,774,540 |