National Organization For Rare Disorders Inc

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.

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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Outside Vendors & Contractors

Vendor Name (Service)Compensation
Future Dmz Future Limo
Patient Services
$322,249
Offscript Media Llc
Promotion/advertising
$145,000
Zuckerman Spaeder Llp
Legal Services
$110,160
Dudley Digital Works
Audio/video Services
$106,784
View All Vendors

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

Grants Awarded

Over the last fiscal year, National Organization For Rare Disorders Inc has awarded $420,936 in support to 14 organizations.

Grant RecipientAmount

THE UNIVERSITY OF CHICAGO

Org PageRecipient Profile

Chicago, IL

PURPOSE: RESEARCH GRANT

$51,000

THE UNIVERSITY OF SHEFFIELD

PURPOSE: RESEARCH GRANT

$49,998

ANN & ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO

Org PageRecipient Profile

Chicago, IL

PURPOSE: RESEARCH GRANT

$47,625

JOHNS HOPKINS UNIVERSITY

Org PageRecipient Profile

Baltimore, MD

PURPOSE: RESEARCH GRANT

$40,000

HENRY M JACKSON FOUNDATION FOR ADVANCEMENT OF MILITARY MEDICINE INC

Org PageRecipient Profile

Bethesda, MD

PURPOSE: RESEARCH GRANT

$25,000

BRIGHAM & WOMENS HOSPITAL - RESEARCH

Org PageRecipient Profile

Somerville, MA

PURPOSE: RESEARCH GRANT

$25,000
View Grant Profile

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 OrganizationAmount
National Tuberous Sclerosis Association Inc

Silver Spring, MD

PURPOSE: TSC TRAVEL AND LODGING ASSISTANCE PROGRAM

$75,000
View Grant Recipient Profile

Endowment Analysis

Beg. Balance$200,000
Ending Balance$200,000

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