EIN 13-3223946

National Organization for Rare Disorders (NORD)

IRS 501(c) type
501(c)(3)
Num. employees
123
City
Year formed
1983
Most recent tax filings
2022-12-01
Description
National Organization for Rare Disorders (NORD), organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
Total revenues
$59,872,383
2022
Total expenses
$48,420,739
2022
Total assets
$49,542,120
2022
Num. employees
123
2022

Program areas at NORD

Patient assistance programs provide financial assistance to help eligible patients access lifesaving therapies and services prescribed by their physicians. In 2022 nord provided financial assistance to 5,472 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 2022, there were 139 patients that nord assisted as part of that special clinical trial travel assistance program.
In 2022, 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, 2022, there were 13,857 participants across 30registries.
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 that can positively impact the diverse Rare disease community.
Nord's educational initiatives strive to empower patients and their families, inform and educate students across disciplines from high school through graduate school, and support the vitally important work of physicians and other healthcare professionals in improving the recognition of symptoms of Rare disease and early, accurate diagnosis as well as improving clinician knowledge and competence in treating Rare diseases. This is done through the development of nord's Rare disease database, the delivery of Rare disease videos and webinars, and through robust educational programming with nord's cme program and at the living Rare, living stronger nord patient and family forum and the nord Rare diseases and orphan products summit. In 2022, 755 people attended the nord summit in person, and 38 people registered for virtual streaming of the meeting. Also, in 2022, there were over 51 million visitors to nord's Rare disease database.
As the leading Rare disease umbrella Organization in the united states, the National Organization for Rare Disorders provides our member organizations with high-touch support in advocacy, educations, research, professional development and communications. Our programs and services offer all of the tools organizational leaders and members need to stay connected and up-to-date on critical information while launching, growing and evolving their organizations. As of december 2022, nord had 341 member patient organizations.
The nord Rare disease centers of excellence program was established to select and to collaborate with a network of us medical institutions with exceptional clinical and research programs for patients with Rare diseases, who will work collaboratively with nord, with one another, and with their local communities of physicians, caregivers, and patients to share expert knowledge, define standards of practice for Rare diseases, accelerate diagnosis, and improve patient care, treatment, and research in Rare diseases. As of december 2022, there were 31 designated nord Rare disease centers of excellence.

Grants made by NORD

GranteeGrant descriptionAmount
Mayo ClinicNorse Research Grant Award$50,000
Cincinnati Children's Hospital Medical Center (CCHMC)Nehi Grant Award$25,000
University of California San Francisco / Ucsf Payroll OfficeAcpmp Research Grant Award$25,000
...and 2 more grants made

Who funds National Organization for Rare Disorders (NORD)

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Critical Path InstituteSubaward$1,604,706
Silicon Valley Community Foundation (SVCF)Health$200,000
TSC AllianceTSC Travel and Lodging Assistance Program$75,000
...and 23 more grants received totalling $2,196,870

Personnel at NORD

NameTitleCompensation
Peter L. SaltonstallBoard Member$493,155
Neeta KotechaVice President of Finance$34,985
Prashant GoelVice President Information Technology$271,096
Heidi RossBoard Member$174,039
Connect With JillVice President of Patient Services
...and 19 more key personnel

Financials for NORD

RevenuesFYE 12/2022
Total grants, contributions, etc.$51,401,122
Program services$8,070,658
Investment income and dividends$415,150
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$-14,547
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$59,872,383

Form 990s for NORD

Fiscal year endingDate received by IRSFormPDF link
2022-122023-05-11990View PDF
2021-122022-09-28990View PDF
2020-122021-07-16990View PDF
2019-122020-12-03990View PDF
2018-122020-02-11990View PDF
...and 11 more Form 990s
Data update history
October 25, 2023
Received grants
Identified 17 new grant, including a grant for $1,604,706 from Critical Path Institute
July 8, 2023
Posted financials
Added Form 990 for fiscal year 2022
June 30, 2023
Updated personnel
Identified 2 new personnel
June 27, 2023
Used new vendors
Identified 1 new vendor, including
June 12, 2023
Posted financials
Added Form 990 for fiscal year 2021
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsHeadquarter / parent organizationsCharities
Issues
HealthDiseases and disorders
Characteristics
MembershipsPolitical advocacyConducts researchLobbyingNational levelEndowed supportCommunity engagement / volunteeringGala fundraisersTax deductible donations
General information
Address
1900 Crown Colony Dr 3rd FL 310
Quincy, MA 02169
Metro area
Boston-Cambridge-Newton, MA-NH
Website URL
rarediseases.org/ 
Phone
(617) 249-7300
Facebook page
NationalOrganizationforRareDisorders 
Twitter profile
@rarediseases 
IRS details
EIN
13-3223946
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1983
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G50: Nerve, Muscle, and Bone Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
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