Health : Patient and Family Support

National Organization for Rare Disorders

Alone we are rare. Together we are strong.®

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.

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

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 impact information is current as of January 2020, 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.

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.
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.
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

Charts

Compensation % of Expenses Paid to Title
$370,073 1.12% Peter Saltonstall President/CEO

Mission

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) 98.21 four stars
Ronald McDonald House Charities of Alabama (AL) 87.56 three stars
Cancer Support Community North Texas (TX) 90.22 four stars
Cancer Support Community (DC) 96.66 four stars
The Shea Center for Therapeutic Riding (CA) 87.07 three 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