Disease, Disorders, Medical Disciplines

National Organization for Rare Disorders, Inc.

Alone we are rare. Together we are strong.

aka NORD

Danbury, CT

Mission

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).

Ruling Year

1989

Principal Officer

Mr. Peter Saltonstall

Main Address

55 Kenosia Avenue

Danbury, CT 06810 USA

Keywords

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

EIN

13-3223946

 Number

1277005678

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.

Sign in or create an account to view Form(s) 990 for 2016, 2016 and 2016.
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Programs + Results

What we aim to solve New!

NORD is focused on expanding current and developing new programs to support the rare disease community.

Our programs

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

SOURCE: Self-reported by organization

Patient Assistance Programs

Where we workNew!

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

For rare disease patients fortunate to have a treatment for their disease, there are still many barriers to accessing affordable and accessible care. From high drug costs, to insurance difficulties, to trouble finding a specialist, rare disease patients face unique hurdles to finding appropriate treatment. NORD is committed to breaking down these barriers and ensuring access to affordable treatment for every rare disease patient.

Through our Rare Action Network, Patient Assistance Programs, Corporate Council, and Advocacy work.

NORD's Rare Action Network℠ (RAN) is the nation's rare disease advocacy network working to improve the lives of the 30 million Americans impacted by rare disease. The mission of RAN is to connect and empower a unified network of individuals and organizations with tools, training, and resources to become effective advocates for rare diseases through national and state based initiatives across the United States.

Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.

By expanding programs to serve others, NORD monitors progress by compiling information on the number of patients served annually.

For more than 30 years, we have been providing services for patients and their families, rare disease patient organizations, medical professionals, and those seeking to develop new diagnostics and treatments. We are here to support every member of the rare disease community with programs and services focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases. We hope to continue doing this through patient advocacy, patient and professional education, patient assistance programs, mentorship for patient organizations, research support, and international partnerships.

External Reviews

Financials

National Organization for Rare Disorders, Inc.

Fiscal year: Jan 01 - Dec 31

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FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2016, 2016 and 2016
A Pro report is also available for this organization for $125.
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Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2016, 2016 and 2016
A Pro report is also available for this organization for $125.
Click here to see what's included.

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.

SOURCE: Self-reported by organization

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?

Yes

CEO OVERSIGHT

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

Not Applicable

ETHICS & TRANSPARENCY

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

Yes

BOARD COMPOSITION

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

Yes

BOARD PERFORMANCE

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

Yes