Disease, Disorders, Medical Disciplines

National Organization for Rare Disorders, Inc.

  • Danbury, CT
  • www.rarediseases.org

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.

Main Programs

  1. Patient Assistance Programs

service areas

National

Self-reported by organization

Areas Served Narrative

National organization with members throughout the United States

Self-reported by organization

ruling year

1989

Principal Officer since 2008

Mr. Peter Saltonstall

Self-reported by organization

Keywords

rare disease, orphan disease, rare, orphan, lesser known, disenfranchised, NORD,

Self-reported by organization

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EIN

13-3223946

Physical Address

55 Kenosia Ave.

Danbury, CT 06811

Also Known As

NORD

Contact

Cause Area (NTEE Code)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Alliance/Advocacy Organizations (H01)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Programs + Results

How does this organization make a difference?

Programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

Self-reported by organization

Program 1

Patient Assistance Programs

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.

Category

Health Care

Budget

$9,184,729.00

Population Served

General Public/Unspecified

service areas

National

Self-reported by organization

Areas Served Narrative

National organization with members throughout the United States

Self-reported by organization

External Reviews

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Source: greatnonprofits.org

Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

NATIONAL ORGANIZATION FOR RARE DISORDERS INC
Fiscal year: Jan 01-Dec 31
Yes, financials were audited by an independent accountant.

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Operations

The people, governance practices, and partners that make the organization tick.

National Organization for Rare Disorders, Inc.

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2014, 2013 and 2012
  • Board Chair and Board Members
  • Access to the GuideStar Community
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Principal Officer

Mr. Peter Saltonstall

BIO

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.

Governance

BOARD CHAIR

Dr. Michael Scott

Community Volunteer

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization


RESPONSE NOT PROVIDED

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?