PLATINUM2024

National Organization for Rare Disorders, Inc.

Alone we are rare. Together we are strong.

aka NORD   |   Quincy, MA   |  www.rarediseases.org

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 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Ruling year info

1989

President & CEO

Mr. Peter Saltonstall

Main address

1900 Crown Colony Drive Suite 310

Quincy, MA 02184 USA

Show more contact info

EIN

13-3223946

NTEE code info

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.

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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

For many years, people with rare diseases walked alone. Patients and their families coped with daunting medical and financial issues with few resources and no one to guide the way. Then, a small group of patient advocates formed a coalition to unify this community and mobilize support to pass the Orphan Drug Act. In 1983, the coalition became NORD, the National Organization for Rare Disorders. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, advancing medical research, and providing patient and family services for those who need them most.

Our programs

SOURCE: Self-reported by organization

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

Patient Services

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 the assurance that NORD protects their confidentiality. There is no conflict of interest with respect to NORD’s eligibility decisions.

Population(s) Served
Adults
People with diseases and illnesses

NORD has been a trusted source for providing critical educational resources to the rare disease community. NORD’s educational initiatives include innovative partnerships and programs to empower patients and their families, inform students of all ages, and support the vitally important work of physicians and other healthcare professionals.

Some of the educational programs and resources we offer for patients, students, and medical professionals include:

Rare Disease Database:
The Rare Disease Database provides reports on more than 1,200 rare diseases for patients and their families.

Continuing Medical Education:
This program will raise diagnostic awareness of typical patient symptoms and treatments that are actually atypical and continue to manifest over time. Diagnostic resources, tools and detailed infrastructure of resources for both providers and patients will be demonstrated in this program.

Students for Rare:
Graduate and medical students can launch a student chapter program at their university to get students informed and interested in rare disease research and awareness. Additionally, high school students and undergraduate medical students have the opportunity to launch a NORD student club at their school to promote rare disease education and awareness.

Joint Publications with NORD:
Through its partnerships with Frontline Medical Communications and Medscape, NORD provides useful medical publications and video resources for clinicians as well as researchers.

Population(s) Served
Adults

NORD’s Research Grant Program provides seed grants to academic scientists for translational or clinical studies related to the development of potential new diagnostics or treatments for rare disease. In at least two cases, NORD grants have resulted ultimately in FDA-approved treatments for patients.

The studies funded with NORD research grants provide preliminary data, on drugs, devices or medical foods that researchers may then use to attract funding from government or industry sponsors to pursue further clinical studies.

Population(s) Served
Adults

Starting with the Orphan Drug Act in 1983, NORD’s mission has always included ensuring that the laws, regulations, and incentives surrounding the drug development process encourage orphan therapy development. For over 35 years, NORD has worked to strengthen the orphan drug development process. NORD works with patients, patient organizations, Congress, the FDA, and the biopharmaceutical industry to strengthen the orphan drug development landscape.


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.

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of policies formally established

This metric is no longer tracked.
Totals By Year
Related Program

Policy & Advocacy

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Average number of dollars given by new donors

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Increasing

Number of coalition members

This metric is no longer tracked.
Totals By Year
Related Program

Policy & Advocacy

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

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

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.

• Bring a national awareness and recognition of the challenges endured by people living with rare diseases;
• A culture of innovation that supports basic and translational research to create diagnostic tests and therapies for all rare diseases;
• Access for all patients to the diagnostics and therapies that will extend and improve their lives.
• A regulatory environment that encourages development and timely approval of safe, effective diagnostics and treatments.

NORD's Rare Action Network℠ (RAN) is the nation's rare disease advocacy network working to improve the lives of the 25-30 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.

For almost 40 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.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

National Organization for Rare Disorders, Inc.
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

National Organization for Rare Disorders, Inc.

Board of directors
as of 02/01/2024
SOURCE: Self-reported by organization
Board chair

Kay Holcombe, MS

Milken Institute; Critical Path Institute

Frederick (Rick) E. Barr

Children's of Mississippi / Batson Children's Hospital

Leon Eidelman

JP Morgan Chase & Co

Dennis Jackman

Independent Board and Organizational Consultant

Jim Palma

TargetCancer Foundation

Mike Porath

The Mighty

Mark Skinner

Institute for Policy Advancement

Susan A. Berry, MD

University of Minnesota

Shafali Spurling Jeste, MD

Children's Hospital Los Angeles, USC Keck School of Medicine

Philip L. Pearl, MD

Boston Children's Hospital

Peter L. Saltonstall

National Organization for Rare Disorders

Lorna Weir

Elevate Healthcare

Tom Kelly

UnitedHealth Group (retired)

Sheldon Schuster PhD

Keck Graduate Institute of Applied Health Sciences

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and 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 ? Yes
  • Ethics and 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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 6/8/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male
Disability status
Person without a disability

Race & ethnicity

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 09/30/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.