National Organization For Rare Disorders Inc
- Assets
- $65.2m
- Revenue
- $66.4m
- Investments
- $0.0
- Employees
- 118
- Location
- Quincy, MA
- Founding
- 05/1989
- Data as of
- 12/2023
- EIN
- 13-3223946
Organization Overview
National Organization For Rare Disorders Inc is located in Quincy, MA. The organization was established in 1989. According to its NTEE Classification (G80) the organization is classified as: Specifically Named Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2023, National Organization For Rare Disorders Inc employed 118 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. National Organization For Rare Disorders Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2023, National Organization For Rare Disorders Inc generated $66.4m in total revenue. This organization has experienced exceptional growth, as over the past 9 years, it has increased revenue by an average of 14.0% each year . All expenses for the organization totaled $52.8m during the year ending 12/2023. While expenses have increased by 11.7% per year over the past 9 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2014, National Organization For Rare Disorders Inc has awarded 96 individual grants totaling $2,641,330. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
NORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY.
Describe the Organization's Program Activity:
Part 3 - Line 4a
PATIENT ASSISTANCE PROGRAMS PROVIDE FINANCIAL ASSISTANCE TO HELP ELIGIBLE PATIENTS ACCESS LIFESAVING THERAPIES AND SERVICES PRESCRIBED BY THEIR PHYSICIANS. IN 2023 NORD PROVIDED FINANCIAL ASSISTANCE TO 5,068 PEOPLE WITH RARE DISEASES. IN ADDITION, NORD WORKS WITH ORGANIZATIONS CONDUCTING CLINICAL TRIALS OF NEW TREATMENTS IN ARRANGING FOR PATIENTS WITH RARE DISEASES AND FAMILY MEMBERS TO TRAVEL TO THE SITES WHERE THE TRIALS ARE BEING CONDUCTED. IN 2023, THERE WERE 155 PATIENTS THAT NORD ASSISTED AS PART OF THAT SPECIAL CLINICAL TRIAL TRAVEL ASSISTANCE PROGRAM.
NORD'S ADVOCACY EFFORTS ARE FOCUSED ON SERVING AS A LIAISON BETWEEN THE RARE DISEASE COMMUNITY AND THE VARIOUS ORGANIZATIONS AND INSTITUTIONS THAT HAVE A DIRECT IMPACT ON THE LIVES OF THE 30 MILLION AMERICANS LIVING WITH RARE DISEASES. NORD ENGAGES ALL TYPES OF ORGANZIATIONS, INCLUDING STATE AND FEDERAL AGENCIES AND LEGISLATORS, OTHER NON-PROFIT ORGANIZATIONS, AND FOR-PROFIT ORGANIZATIONS TO HELP RAISE AWARENESS AROUND THE NEEDS OF RARE DISEASE PATIENTS AND TO COLLECTIVELY CONTRIBUTE TO REALIZING SOLUTIONS THAT CAN POSITIVELY IMPACT THE DIVERSE RARE DISEASE COMMUNITY.
IN 2023, NORD HAS CONTINUED TO DEVELOP ITS NATURAL HISTORY/REGISTRY PLATFORM TO HELP RESEARCHERS BETTER UNDERSTAND THE PATIENT EXPERIENCE AND PROMOTE DEVELOPMENT OF INNOVATIVE, SAFE AND EFFECTIVE THERAPIES. AS OF DECEMBER 31, 2023, THERE WERE 14,923 PARTICIPANTS ACROSS 35 REGISTRIES.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Peter Saltonstall President/ceo | OfficerTrustee | 35 | $496,804 |
Kathleen Holcombe Chair | OfficerTrustee | 10 | $0 |
Dennis Jackman Vice Chair | OfficerTrustee | 1 | $0 |
Leon Eidelman Treasurer | OfficerTrustee | 5 | $0 |
Jim Palma Secretary | OfficerTrustee | 1 | $0 |
Mark Skinner Director | Trustee | 5 | $0 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
Future Dmz Future Limo Patient Services | 12/30/23 | $271,585 |
Zuckerman Spaeder Llp Legal Services | 12/30/23 | $106,386 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $1,915,500 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $1,927,961 |
| All other contributions, gifts, grants, and similar amounts not included above | $51,748,111 |
| Noncash contributions included in lines 1a–1f | $5,979 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $55,591,572 |
| Total Program Service Revenue | $8,312,225 |
| Investment income | $1,751,860 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $741,796 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $66,397,453 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $238,574 |
| Grants and other assistance to domestic individuals. | $34,397,934 |
| Grants and other assistance to Foreign Orgs/Individuals | $375,725 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $1,161,618 |
| Compensation of current officers, directors, key employees. | $215,677 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $8,256,602 |
| Pension plan accruals and contributions | $369,432 |
| Other employee benefits | $1,344,546 |
| Payroll taxes | $637,795 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $156,601 |
| Fees for services: Accounting | $60,100 |
| Fees for services: Lobbying | $145,323 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $53,587 |
| Fees for services: Other | $1,680,239 |
| Advertising and promotion | $0 |
| Office expenses | $0 |
| Information technology | $580,005 |
| Royalties | $0 |
| Occupancy | $534,328 |
| Travel | $45,353 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $1,530,428 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $754,550 |
| Insurance | $0 |
| All other expenses | $0 |
| Total functional expenses | $52,832,739 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $4,078,715 |
| Savings and temporary cash investments | $4,021,694 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $20,885,685 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $371,112 |
| Net Land, buildings, and equipment | $1,909,847 |
| Investments—publicly traded securities | $33,249,776 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $108,039 |
| Other assets | $529,596 |
| Total assets | $65,154,464 |
| Accounts payable and accrued expenses | $2,676,954 |
| Grants payable | $672,379 |
| Deferred revenue | $513,639 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $670,049 |
| Total liabilities | $4,533,021 |
| Net assets without donor restrictions | $11,194,506 |
| Net assets with donor restrictions | $49,426,937 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $65,154,464 |
Grants Awarded
Over the last fiscal year, National Organization For Rare Disorders Inc has awarded $238,574 in support to 9 organizations.
| Grant Recipient | Amount |
|---|---|
CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER PURPOSE: ACDMPV RESEARCH AT CHILDREN'S HOSPITAL | $25,000 |
THE UNIVERSITY OF CHICAGO PURPOSE: RESEARCH GRANT AWARD | $25,000 |
WAKE FOREST UNIVERSITY HEALTH SCIENCES PURPOSE: ACPMP GRANT AWARD WFUHS | $25,000 |
WAKE FOREST UNIVERSITY HEALTH SCIENCES PURPOSE: ACPMP SEED FUNDING AWARD - WAKE FOREST | $25,000 |
DUKE UNIVERSITY OFFICE OF SPONSORED PROGRAMS PURPOSE: RESEARCH GRANT AWARD - MALONIC ACIDURIA - PROF. FILIANO | $25,000 |
CHILDREN'S HOSPITAL OF PHILADELPHIA PURPOSE: NORSE/FIRES RESEARCH GRANT AWARD | $23,099 |