National Organization For Rare Disorders Inc
- Assets
- $37.9m
- Revenue
- $43.2m
- Investments
- $0.0
- Employees
- 111
- Location
- Quincy, MA
- Founding
- 05/1989
- Data as of
- 12/2021
- 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 12/2021, National Organization For Rare Disorders Inc employed 111 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 12/2021, National Organization For Rare Disorders Inc generated $43.2m in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 11.3% each year . All expenses for the organization totaled $57.7m during the year ending 12/2021. While expenses have increased by 16.7% per year over the past 7 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 81 individual grants totaling $2,247,269. 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
2021
Describe the Organization's Mission:
Part 3 - Line 1
NORD STRIVES TO IMPROVE THE LIVES OF THOSE WITH RARE DISEASES THROUGH ASSISTANCE PROGRAMS, EDUCATION, ADVOCACY AND RESEARCH.
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 2021 NORD PROVIDED FINANCIAL ASSISTANCE TO 9,178 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 2021, THERE WERE 145 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 THERARE DISEASE COMMUNITY AND THE VARIOUS ORGANIZATIONS AND INSTITUTIONSTHAT HAVE A DIRECT IMPACT ON THE LIVES OF THE 30 MILLION AMERICANSLIVING 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 POSITIVELY IMPACT THE DIVERSE RARE DISEASE COMMUNITY.
IN 2021, NORD HAS CONTINUED TO DEVELOP ITS NATURAL HISTORY/REGISTRYPLATFORM TO HELP RESEARCHERS BETTER UNDERSTAND THE PATIENT EXPERIENCEAND PROMOTE DEVELOPMENT OF INNOVATIVE, SAFE AND EFFECTIVE THERAPIES. ASOF DECEMBER 31, 2021, THERE WERE 12,344 PARTICIPANTS ACROSS 29DISEASE-SPECIFIC DATABASES AS PART OF NORD'S REGISTRY PROGRAM.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Peter Saltonstall President/ceo | OfficerTrustee | 35 | $452,672 |
Pamela Gavin Chief Operating Officer | Officer | 35 | $345,320 |
Prashant Goel VP Information Technology | 35 | $258,821 | |
Rachel Sher VP Policy & Regulatory Affairs | 35 | $225,960 | |
Alexa Moore VP Of Development | 35 | $218,063 | |
Edward Neilan Chief Medical & Scientific Officer | 35 | $180,810 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
Future Dmz Future Limo Patient Services | 12/30/21 | $322,249 |
Offscript Media Llc Promotion/advertising | 12/30/21 | $145,000 |
Zuckerman Spaeder Llp Legal Services | 12/30/21 | $110,160 |
Dudley Digital Works Audio/video Services | 12/30/21 | $106,784 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $1,828,085 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $34,851,836 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $36,679,921 |
| Total Program Service Revenue | $6,266,078 |
| Investment income | $223,148 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $19,025 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $43,188,172 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $420,936 |
| Grants and other assistance to domestic individuals. | $43,634,227 |
| Grants and other assistance to Foreign Orgs/Individuals | $143,148 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $1,025,976 |
| Compensation of current officers, directors, key employees. | $366,784 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $7,234,869 |
| Pension plan accruals and contributions | $201,106 |
| Other employee benefits | $994,723 |
| Payroll taxes | $549,993 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $279,105 |
| Fees for services: Accounting | $54,207 |
| Fees for services: Lobbying | $172,678 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $61,515 |
| Fees for services: Other | $602,203 |
| Advertising and promotion | $0 |
| Office expenses | $0 |
| Information technology | $487,430 |
| Royalties | $0 |
| Occupancy | $497,517 |
| Travel | $2,284 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $433,971 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $457,604 |
| Insurance | $0 |
| All other expenses | $467,025 |
| Total functional expenses | $57,720,517 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $6,278,890 |
| Savings and temporary cash investments | $7,209,769 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $1,240,510 |
| 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 | $351,001 |
| Net Land, buildings, and equipment | $1,248,813 |
| Investments—publicly traded securities | $21,200,029 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $74,147 |
| Other assets | $272,087 |
| Total assets | $37,875,246 |
| Accounts payable and accrued expenses | $1,435,985 |
| Grants payable | $942,285 |
| Deferred revenue | $242,900 |
| 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 | $165,080 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $147,299 |
| Total liabilities | $2,933,549 |
| Net assets without donor restrictions | $9,168,421 |
| Net assets with donor restrictions | $25,773,276 |
| 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 | $37,875,246 |
Grants Awarded
Over the last fiscal year, National Organization For Rare Disorders Inc has awarded $420,936 in support to 14 organizations.
| Grant Recipient | Amount |
|---|---|
Chicago, IL PURPOSE: RESEARCH GRANT | $51,000 |
THE UNIVERSITY OF SHEFFIELD PURPOSE: RESEARCH GRANT | $49,998 |
Chicago, IL PURPOSE: RESEARCH GRANT | $47,625 |
Baltimore, MD PURPOSE: RESEARCH GRANT | $40,000 |
Bethesda, MD PURPOSE: RESEARCH GRANT | $25,000 |
Somerville, MA PURPOSE: RESEARCH GRANT | $25,000 |
Grants Recieved
Over the last fiscal year, we have identified 1 grants that National Organization For Rare Disorders Inc has recieved totaling $75,000.
| Awarding Organization | Amount |
|---|---|
National Tuberous Sclerosis Association Inc Silver Spring, MD PURPOSE: TSC TRAVEL AND LODGING ASSISTANCE PROGRAM | $75,000 |
Endowment Analysis
| Beg. Balance | $200,000 |
| Ending Balance | $200,000 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Joslin Diabetes Center Inc Boston, MA | $107,556,453 | $76,953,905 |
Fund For Public Health In New York Inc New York, NY | $56,819,635 | $72,117,813 |
National Organization For Rare Disorders Inc Quincy, MA | $37,875,246 | $43,188,172 |
Lymphoma Research Foundation New York, NY | $31,207,101 | $16,103,858 |
African Leaders Malaria Alliance Inc Laurelton, NY | $8,771,808 | $10,298,494 |
The Marfan Foundation Inc Port Washington, NY | $16,600,923 | $9,814,628 |
Learning Disabilities Association Of Western New York Inc Kenmore, NY | $2,525,018 | $4,880,891 |
Eb Research Partnership Inc New York, NY | $20,862,871 | $7,736,054 |
Yairockland County Association For People With Disabilities New York, NY | $0 | $3,637,352 |
Allegany Council On Alcoholism And Substance Abuse Inc Wellsville, NY | $2,491,126 | $2,749,912 |
Positudes Inc Westbury, NY | $32,648,999 | $5,043,435 |
Learning Disabilities Association Of Central New York Inc Syracuse, NY | $1,127,116 | $1,639,130 |