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National Organization for Rare Disorders, Inc. Organization Name provided in the GuideStar Exchange* as of 07/24/2014: National Organization for Rare Disorders, Inc.

Organization Name as listed in the IRS Business Master File as of 07/14/2014: NATIONAL ORGANIZATION FOR RARE DISORDERS INC

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AKA  NORD
Danbury, CT
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GuideStar Summary

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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is not available
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Basic Organization Information

National Organization for Rare Disorders, Inc. Organization Name provided in the GuideStar Exchange* as of 07/24/2014: National Organization for Rare Disorders, Inc.

Organization Name as listed in the IRS Business Master File as of 07/14/2014: NATIONAL ORGANIZATION FOR RARE DISORDERS INC

* The 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.
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.

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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Annual Revenue & Expenses (GuideStar Exchange,
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July 2014)

Fiscal Year Starting: January 1, 2012
Fiscal Year Ending: December 31, 2012

Total Revenue $10,568,516
Total Expenses $15,621,934

Revenue & Expenses (GuideStar Exchange,
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July 2014)

Fiscal Year Starting: January 1, 2012
Fiscal Year Ending: December 31, 2012

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the 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 website is an ongoing process.

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Forms 990 Provided by the Nonprofit

Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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July 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.

Board Chair (GuideStar Exchange,
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July 2014)

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Board of Directors (GuideStar Exchange,
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July 2014)

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Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in July 2014

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Programs

Program: Patient Assistance Programs (GuideStar Exchange,
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July 2014)

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:

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Impact Summary from the Nonprofit

This organization has not provided an impact summary.
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Reviews

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