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Health : Patient and Family Support

National Organization for Rare Disorders

Alone we are rare. Together we are strong.®

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Impact Information is available from our partner, GuideStar

four stars

98.21

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 98.21 four stars
  Financial 97.47 four stars
  Accountability & Transparency 100.00 four stars
This rating was published 08/01/2018 and includes data from FY2017, 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.

Impact Information

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GuideStar is Charity Navigator's trusted partner in sharing information on how this organization seeks impact.  GuideStar has recognized this organization with a Platinum Seal of Transparency for voluntarily and publicly sharing information about how they measure their progress and results.  Learn More about Impact Information.
Reported Results
Showing 3 of 4
Total in 2018
Number of policies formally established
12
Average number of dollars given by new donors
24,822
Number of coalition meetings held and attendance
2,000
Number of coalition members
5,000
This organization has earned a GuideStar's Platinum Seal of Transparency by voluntarily sharing the measures of progress and results they use to pursue their mission. Organizations earn Platinum Seals by selecting from a catalog of over 900 expert recognized metrics or by creating a new metric that best fits their work. This information is reported by the organization and displayed publicly on their GuideStar Nonprofit Profile. With over 1.6 million Nonprofit Profiles, 9 million annual visitors and over 200 data partners, GuideStar is the world's leading source of information about nonprofit organizations. A nonprofit itself, GuideStar is dedicated to providing better data for better decisions for a better world.
This impact information is current as of July 2019, when it was provided to us by GuideStar. At this time, Impact information published on this organization's page has no effect on its rating per our methodology.

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

Financial

four stars

97.47

Accountability & Transparency

four stars

100.00

This rating was published 08/01/2018 and includes data from FY2017, 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)		 84.9%
  Administrative Expenses 10.9%
  Fundraising Expenses 4.0%
  Fundraising Efficiency $0.03
  Working Capital Ratio (years) 1.31
  Program Expenses Growth 12.4%
  Liabilities to Assets 6.8%
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) 98.21 four stars
Ronald McDonald House of Fort Worth (TX) 90.42 four stars
Shanti (CA) 86.47 three stars
Angel Foundation (MN) 88.55 three stars
Operation Access (CA) 86.33 three stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $40,329,556
   Federated Campaigns $0
   Membership Dues $1,321,624
   Fundraising Events $1,375,551
   Related Organizations $0
   Government Grants $0
Total Contributions $43,026,731
   Program Service Revenue $5,254,373
Total Primary Revenue $48,281,104
   Other Revenue $-149,973
TOTAL REVENUE $48,131,131
   
EXPENSES  
   Program Expenses $28,183,238
   Administrative Expenses $3,522,216
   Fundraising Expenses $1,285,288
TOTAL FUNCTIONAL EXPENSES $32,990,742
   
Payments to Affiliates $0
Excess (or Deficit) for the year $15,140,389
   
Net Assets $35,662,359

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 $26,050,636 92.4%
Research Grants $1,057,318 3.8%
Advocacy Services $686,768 2.4%

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

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
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
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, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
Compensation % of Expenses Paid to Title
$370,073 1.12% Peter Saltonstall President/CEO

Highly Rated

Charity Name & State Overall Score Overall Rating
National Organization for Rare Disorders (CT) 98.21 four stars
Atlanta Ronald McDonald House Charities (GA) 94.98 four stars
Friends of United Hatzalah of Israel (NY) 93.91 four stars
Patient Advocate Foundation (VA) 96.66 four stars
Nevada Childhood Cancer Foundation (NV) 92.22 four stars

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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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