Cause IQ organization profile

National Organization for Rare Disorders (NORD)

Program areas | Form 990s | Financials | Vendors | Personnel | Peers

NORD is a nerve, muscle, or bone disease organization based in Quincy, MA that was founded in 1983. As of 2019 they had $47 million in revenue and $50 million in assets.

National Organization for Rare Disorders (NORD), organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

Fiscal year end:
Revenue trends:
Asset trends:

Program areas at NORD

Patient assistance programs provide financial assistance to help eligible patients access lifesaving therapies and services prescribed by their physicians. In 2018 nord provided financial assistance to 7,459 people with Rare diseases. In addition, nord works with organizations conducting clinical trial s 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 2018, there were 274 patients that nord assisted as part of that special clinical trial travel assistance program.

In 2018, nord has continued to develop its natuarl history/registry platform to help researchers better understand the patient experience and promote development of innovative, safe and effective therapies. As of december 31, 2018, there were 7,556 participants across 23 diesase-specific databases as part of nord's registry program.

Nord educational initiatives strive to empower patients and their families, inform students of all ages, and support the vitally important work of physicians and other healthcare professionals in creating a better understanding of Rare diseases. This is done through the development of nord's Rare disease database, educational webinars and videos, and robust educational programming through nord's cme partnerships and at nord's Rare diseases and orphan products breakthrough summit (Rare summit). In 2018 over 800 people attended nord's Rare summit where key stakeholders in the Rare disease space gather to learn, connect and create positive change for the broader Rare disease community. On Rare disease day (february 28, 2018) nord hosted 178 events across the country. In addition, in 2018, there were over 12.5 million visitors to the Organization's website to read nord's Rare disease reports, which offer information about each Rare disease in easy-to-understand language.

Form 990s for NORD

Fiscal year endingDate received by IRSFormPDF link
2018-12Feb 11, 2020990View PDF
2017-12Jul 18, 2018990View PDF
2016-12Jun 14, 2018990View PDF
2016-12Apr 18, 2018990View PDF
2016-12Jan 18, 2018990View PDF
...and seven more Form 990 PDFs

Financials for NORD

Total grants, contributions, etc.$42,070,943
Program services$5,024,265
Investment income and dividends$145,033
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$-117,142
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$47,123,099

Vendors for NORD

VendorServicesAmount paidDate
AbilaFundraising software2020-06-15
██████████CRM software2020-06-15
█████ ████Advocacy software; Fundraising software; Marketing software2020-06-15
█████████Content management system software2020-06-15
████████ ███████Marketing software2020-06-15
█████████Fundraising software2020-06-15
█████████ ███████ ███████ ███ ██ ██Tax accounting2019-11-04
██████ ███Software2018-09-08
...and one more vendors

Personnel at NORD

NameTitleCompensationMost recent data
Connect With PeterPresident and Chief Executive Officer-May 20, 2020
Pamela GavinChief Strategy Officer$286,045May 20, 2020
███████ ██████Vice President of Finance Connect with Vincent-May 20, 2020
██████ ████Vice President , Policy and Regulatory Affairs-May 20, 2020
█████ █████Vice President of Development-May 20, 2020
█████████ ██████████Vice President of Access and Outcomes / Vice President of Patient Services$119,554March 10, 2018
████ ██████Vice President of Educational Initiatives$115,465May 20, 2020
█████ █████████Director of Marketing and Communications-May 20, 2020
███ ███████Director of It$158,017Dec. 31, 2017
███████ ███████Director of Information Technology-May 20, 2020
...and 20 more key personnel

Peer arthritis, muscular dystrophy, multiple sclerosis, and epilepsy organizations

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4JRF Ortho (JRF)501(c)(3)$42 millionCentennial, CO
5Foundation Fighting Blindness (FFB)501(c)(3)$53 millionColumbia, MD
6Cohen Veterans Bioscience501(c)(3)$16 millionCambridge, MA
7National Breast Cancer Foundation (NBCF)501(c)(3)$14 millionFrisco, TX
8HJF Medical Research International (HJFMRI)501(c)(3)$65 millionBethesda, MD
9Melanoma Research Alliance (MRA)501(c)(3)$24 millionWashington, DC
10Cystic Fibrosis Foundation - Group Return for the Chapters501(c)(3)$113 millionBethesda, MD
11American College of Gastroenterology (ACG)501(c)(3)$34 millionBethesda, MD
12New York Stem Cell Foundation (NYSCF)501(c)(3)$38 millionNew York, NY
13Community Research Initiative of New England (CRI)501(c)(3)$22 millionBoston, MA
14Susan G Komen501(c)(3)$90 millionDallas, TX
15BrightFocus Foundation501(c)(3)$42 millionClarksburg, MD
16Alexs Lemonade Stand Foundation (ALSF)501(c)(3)$25 millionBala Cynwyd, PA
17American Leprosy Missions (ALM)501(c)(3)$19 millionGreenville, SC
18Hemophilia of Georgia (HoG)501(c)(3)$24 millionAtlanta, GA
19Magee-Womens Research Institute and Foundation (MWRI)501(c)(3)$61 millionPittsburgh, PA
20Cancer Research Institute (CRI)501(c)(3)$25 millionNew York, NY
21Lupus Research Alliance (ALR)501(c)(3)$19 millionNew York, NY
22Children's Health Care Foundation501(c)(3)$25 millionMinneapolis, MN
23Brain and Behavior Research Foundation501(c)(3)$19 millionNew York, NY
24Parker Institute for Cancer Immunotherapy501(c)(3)$113 millionSan Francisco, CA
25Cure Pancreatic Cancer Lustgarten Foundation501(c)(3)$44 millionWoodbury, NY