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Health : Patient and Family Support

National Organization for Rare Disorders

Alone we are rare. Together we are strong.®

four stars

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 four stars
  Financial 100.00 four stars
  Accountability & Transparency 100.00 four stars
This rating was published 04/01/2021 and includes data from FY2019, the most recent 990 received at that time.
Why isn't this based on more recent data?

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.

Learn more about how we calculate the overall score and rating.

Financial

four stars

100.00

Accountability & Transparency

four stars

100.00

This rating was published 04/01/2021 and includes data from FY2019, the most recent 990 received at that time.
Why isn't this based on more recent data?
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.
Information Provided on the Form 990  
  Independent Voting Board Members
  No Material diversion of assets
  Audited financials prepared by independent accountant
  Does Not Provide Loan(s) to or Receive Loan(s) From related parties
  Documents Board Meeting Minutes
  Provided copy of Form 990 to organization's governing body in advance of filing
  Conflict of Interest Policy
  Whistleblower Policy
  Records Retention and Destruction Policy
  CEO listed with salary
  Process for determining CEO compensation
  Board Listed / Board Members Not Compensated
Is the following information easily accessible on the charity's website?  
  Donor Privacy Policy
  Board Members Listed
  Audited Financials
  Form 990
  Key staff listed

Highly Rated

Charity Name & State Overall Score Overall Rating
National Organization for Rare Disorders (CT) 100.00 four stars
Ronald McDonald House Charities of Northwest Florida (FL) 90.38 four stars
Ronald McDonald House of Rochester, Minnesota (MN) 91.80 four stars
Cancer Support Community Greater Cincinnati-Northern Kentucky (OH) 91.37 four stars
Tulsa CARES (OK) 89.56 three stars

Compare These Charities (Highly Rated)

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 four stars
2018-12 06/01/2020 100.00 four stars
2016-12 08/01/2018 95.45 four stars
2016-12 08/01/2018 95.45 four stars
2015-12 05/01/2017 91.19 four stars
2014-12 08/01/2016 92.74 four stars
2013-12 06/01/2016 88.03 three stars
 
CN 2.0
2013-12 08/01/2015 92.63 four stars
2012-12 05/01/2014 88.93 three stars
2011-12 03/01/2013 91.30 four stars
2010-12 09/01/2012 94.43 four stars
2010-12 03/01/2012 94.70 four stars
2009-12 09/20/2011 90.90 four stars
 
CN 1.0
2009-12 02/01/2011 86.72 three stars
2008-12 03/01/2010 99.49 four stars
2007-12 12/01/2008 99.59 four stars
2006-12 12/01/2007 97.16 four stars
2005-12 11/01/2006 97.19 four stars
2004-12 10/01/2005 96.82 four stars
2003-12 10/01/2004 98.64 four stars

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 four stars
Center for Mind-Body Medicine (DC) 87.31 three stars
Ronald McDonald House Charities of Tampa Bay (FL) 91.49 four stars
Eagle Mount (MT) 92.21 four stars
Ronald McDonald House Charities of Northwest Florida (FL) 90.38 four stars

Compare These Charities (Highly Rated)

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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