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Health : Patient and Family Support

National Organization for Rare Disorders

Alone we are rare. Together we are strong.®

100.00

55 Kenosia Avenue Danbury, CT 06813
tel: (203) 744-0100   Web Site
EIN: 13-3223946

Board Leadership
Marshall L. Summar
Chairman

CEO
Peter Saltonstall
President, CEO

  Score
(out of 100)
Rating
Overall Score & Rating 100.00
  Financial 100.00
  Accountability & Transparency 100.00
This rating was published 04/01/2021 and includes data from FY2019, the most recent 990 received at that time.

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Financial

100.00

Accountability & Transparency

100.00

This rating was published 04/01/2021 and includes data from FY2019, the most recent 990 received at that time.
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)
88.0%
  Administrative Expenses 8.0%
  Fundraising Expenses 3.8%
  Fundraising Efficiency $0.03
  Working Capital Ratio (years) 1.63
  Program Expenses Growth 15.5%
  Liabilities to Assets 3.7%
All data for Financial Performance Metrics calculations was provided by National Organization for Rare Disorders on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by National Organization for Rare Disorders on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
National Organization for Rare Disorders (CT) 100.00
Toby Keith Foundation (OK) 86.39
The Valerie Fund (NJ) 93.60
National Foundation for Transplants, Inc. (TN) 94.00
Ronald McDonald House Charities of Augusta (GA) 88.35

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $41,978,717
   Federated Campaigns $0
   Membership Dues $1,665,303
   Fundraising Events $0
   Related Organizations $0
   Government Grants $0
Total Contributions $43,644,020
   Program Service Revenue $8,392,510
Total Primary Revenue $52,036,530
   Other Revenue $376,847
TOTAL REVENUE $52,413,377
   
EXPENSES  
   Program Expenses $37,376,798
   Administrative Expenses $2,928,097
   Fundraising Expenses $1,484,799
TOTAL FUNCTIONAL EXPENSES $41,789,694
   
Payments to Affiliates $0
Excess (or Deficit) for the year $10,623,683
   
Net Assets $59,419,323

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Patient Services $32,683,732 87.4%
Registry Platform $1,553,178 4.2%
Educational Initiatives $1,208,255 3.2%

Ratings History
National Organization for Rare Disorders has received 6 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2019-12 04/01/2021 100.00
2018-12 06/01/2020 100.00
2016-12 08/01/2018 95.45
2016-12 08/01/2018 95.45
2015-12 05/01/2017 91.19
2014-12 08/01/2016 92.74
2013-12 06/01/2016 88.03
 
CN 2.0
2013-12 08/01/2015 92.63
2012-12 05/01/2014 88.93
2011-12 03/01/2013 91.30
2010-12 09/01/2012 94.43
2010-12 03/01/2012 94.70
2009-12 09/20/2011 90.90
 
CN 1.0
2009-12 02/01/2011 86.72
2008-12 03/01/2010 99.49
2007-12 12/01/2008 99.59
2006-12 12/01/2007 97.16
2005-12 11/01/2006 97.19
2004-12 10/01/2005 96.82
2003-12 10/01/2004 98.64

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 13-3223946
Name in IRS Master File NATIONAL ORGANIZATION FOR RARE DISORDERS INC
NTEE Code [Not Provided by IRS]
NTEE Classification [Not Provided by IRS]
NTEE Type [Not Provided by IRS]
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (179) Other health services
(603) Non-financial services of facilities to other organizations
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date May, 1989
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End December
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • December, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
Compensation % of Expenses Paid to Title
$399,286 0.95% Peter Saltonstall President, CEO

Highly Rated

Charity Name & State Overall Score Overall Rating
National Organization for Rare Disorders (CT) 100.00
Ronald McDonald House Charities of Mid-Missouri (MO) 86.44
National Vaccine Information Center (VA) 93.82
Convalescent Aid Society (CA) 90.83
Mario Lemieux Foundation (PA) 92.86

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

National Organization for Rare Disorders
55 Kenosia Avenue
Danbury, CT 06813
tel: (203) 744-0100
fax: (203) 798-2291
EIN: 13-3223946

Visit Web Site

Board Leadership

Marshall L. Summar
Chairman

CEO

Peter Saltonstall
President, CEO

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