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National Organization for Rare Disorders, Inc.

AKA NORD

Danbury, CT

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National Organization for Rare Disorders, Inc.

Also Known As:
NORD
Physical Address:
Danbury, CT 06810 
EIN:
13-3223946
Web URL:
www.rarediseases.org
Leadership:
Mr. Peter Saltonstall
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Legitimacy Information

  • This organization is registered with the IRS.
  • This organization is required to file an IRS Form 990 or 990-EZ.

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Forms 990 from IRS Additional Information IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar Web site is an ongoing process.

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A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

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Annual Revenue & Expenses Additional Information Financial information on GuideStar is either digitized from Form 990 images we receive from the IRS or submitted by the nonprofits themselves through the GuideStar Exchange (990 filers cannot override Form 990 financial data). If your organization does not file a Form 990, 990-EZ, or 990-PF and you would like to have your financial data displayed in this section, join the GuideStar Exchange today!

Fiscal Year Starting: Jan 1, 2012
Fiscal Year Ending: Dec 31, 2012
Revenue
Total Revenue $10,568,516
Expenses
Total Expenses $15,621,934

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Financial data from Forms 990 for Year 2011, 2010, 2009, 2008, 2007 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

Financial SCAN

Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
  • Advanced Search: Allows you to search by EIN (Employer Identification Number), organization name, city, state, revenue, expenses, and assets.



GuideStar Exchange Member

This organization is a Silver-level GuideStar Exchange participant, demonstrating its commitment to transparency.

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Basic Organization Information

National Organization for Rare Disorders, Inc.

Also Known As:
NORD
Physical Address:
Danbury, CT 06810 
EIN:
13-3223946
Web URL:
www.rarediseases.org 
NTEE Category:
G Disease, Disorders, Medical Disciplines 
G99 Diseases, Disorders, Medical Disciplines N.E.C. 
H Medical Research 
H01 Alliance/Advocacy Organizations 
Ruling Year:
1989 

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Mission Statement

NORD represents 1 in 10 Americans who have rare diseases with programs of advocacy, education, research and patients services. It serves as the voice of the rare disease community on important issues of public policy. It also provides information on rare diseases in understandable language for patients and their families, with referrals to support groups and other helpful resources. It encourages research on new diagnostics and treatments and administers patients assistance programs. NORD mentors rare disease support groups so that they can more effectively help their members. It serves as the point of connection between the patient community and key government agencies, such as the National Institutes of Health (NIH) and Food and Drug Administration (FDA). Nearly 150 patient organizations are members of NORD and look to NORD for guidance, mentoring and leadership.

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

Financial SCAN

Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
  • Advanced Search: Allows you to search by EIN (Employer Identification Number), organization name, city, state, revenue, expenses, and assets.

Financial Data

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Revenue and Expenses

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Revenue and Expense data from Forms 990 for 2011, 2010, 2009, 2008, 2007 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart


Balance Sheet

Balance Sheet data from Forms 990 for Year 2011, 2010, 2009, 2008, 2007 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

Financial SCAN

Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
  • Advanced Search: Allows you to search by EIN (Employer Identification Number), organization name, city, state, revenue, expenses, and assets.


Forms 990 Provided by the Nonprofit

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Financial Statements

Financial Statements for 2012, 2008 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart


Annual Reports

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Leadership (GuideStar ExchangeThe GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more. February, 2014)

Mr. Peter Saltonstall

Term:

Since Apr 2008

Profile:

Peter Saltonstall has more than 30 years of healthcare experience in both for-profit and not-for-profit environments, as well as extensive federal and commercial market knowledge. He has held senior positions within a number of major academic medical centers and organizations, including Harvard's Brigham and Women's Hospital, Tufts-New England Medical Center, St. Elizabeth's Medical Center of Boston and Harvard's Risk Management Foundation. He played a key role in developing one of the nation's first patient safety management systems, and he was a leading advocate for the Patient Safety Act of 2005, which has dramatically improved the reporting of events that adversely affect patients.



Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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Program: Patient Assistance Programs

Budget:
$9,184,729
Category:
Health Care
Population Served:
General Public/Unspecified

Program Description:

NORD works closely with humanitarian-minded pharmaceutical and biotechnology companies to ensure that certain vital medications are available to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications. NORD’s programs have set the standards for fairness, equity, and unbiased eligibility. The NORD programs have gained respect from the patient communities, pharmaceutical companies, healthcare professionals, government officials, and the public. Participants have assurance that NORD protects their confidentiality. There is no conflict of interest with respect to NORD’s eligibility decisions.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:



Contractor data is available for this organization!

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Impact Summary from the Nonprofit

This organization has not provided an impact summary.

Organization Data Available

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