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Health : Patient and Family Support

National Organization for Rare Disorders

Alone we are rare. Together we are strong.®

four stars

91.19

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

Board Leadership
Marshall Summar
Chairman

CEO
Peter L. Saltonstall
President, CEO

 
 
  Score
(out of 100)		 Rating
Overall Score & Rating 91.19 four stars
  Financial 89.71 three stars
  Accountability & Transparency 93.00 four stars
This rating was published 05/01/2017 and includes data from FY2015, the most recent 990 received at that time.
Why isn't this based on more recent data?

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

Financial

three stars

89.71

Accountability & Transparency

four stars

93.00

This rating was published 05/01/2017 and includes data from FY2015, 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)		 84.3%
  Administrative Expenses 10.1%
  Fundraising Expenses 5.5%
  Fundraising Efficiency $0.05
  Working Capital Ratio (years) 0.54
  Program Expenses Growth 4.4%
  Liabilities to Assets 20.1%
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) 91.19 four stars
Ronald McDonald House Charities of Greater Washington, DC (DC) 93.83 four stars
Children of Bellevue (NY) 85.28 three stars
Ronald McDonald House Charities of Central Indiana (IN) 85.66 three stars
Ronald McDonald House Charities of Western Washington & Alaska (WA) 94.70 four stars

Compare These Charities (Highly Rated)

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.

REVENUE  
Contributions  
   Contributions, Gifts & Grants $16,434,381
   Federated Campaigns $23,817
   Membership Dues $1,254,505
   Fundraising Events $1,033,504
   Related Organizations $0
   Government Grants $0
Total Contributions $18,746,207
   Program Service Revenue $1,576,789
Total Primary Revenue $20,322,996
   Other Revenue $125,449
TOTAL REVENUE $20,448,445
   
EXPENSES  
   Program Expenses $16,635,968
   Administrative Expenses $1,880,855
   Fundraising Expenses $1,032,906
TOTAL FUNCTIONAL EXPENSES $19,549,729
   
Payments to Affiliates $0
Excess (or Deficit) for the year $898,716
   
Net Assets $10,984,239

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 $14,338,019 86.2%
Membership & Education $987,419 5.9%
Advocacy Services $663,907 4.0%

Ratings History
National Organization for Rare Disorders has received 2 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
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
2002-12 01/01/2004 98.35 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, 2015
  • December, 2014
  • December, 2013
  • December, 2012
  • December, 2011

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

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Compensation % of Expenses Paid to Title
$257,692 1.31% Peter Saltonstall Executive Director

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.

Highly Rated

Charity Name & State Overall Score Overall Rating
National Organization for Rare Disorders (CT) 91.19 four stars
Ryan House (AZ) 91.25 four stars
HealthWell Foundation (VA) 97.17 four stars
Cancer Support Community Los Angeles (CA) 87.04 three stars
Children's Burn Foundation (CA) 92.67 four stars

Compare These Charities (Highly Rated)

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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 Summar
Chairman

CEO

Peter L. Saltonstall
President, CEO

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