Insights

Strategic Partnerships NORD actively collaborates with patient organizations, government agencies (NIH, FDA), and healthcare initiatives like IAMRARE and OpenEvidence. This indicates strong receptivity to alliance-based programs, data platforms, and policy advocacy partnerships that help expand reach and impact.

Policy & Funding Access With leadership focus in Federal and Global Public Policy and Regulatory Affairs, there are opportunities to offer policy analytics, legislative tracking tools, grant and funding management solutions, and compliance services tailored to non-profit and rare-disease funding landscapes.

Education & CME Launch of the Earn Your Stripes Rare Disease CME Challenge signals demand for continuing medical education programs. Sales opportunities exist for e-learning platforms, content licensing, accreditation services, and physician engagement solutions that scale CME participation.

Data & Registry IAMRARE partnership and patient data initiatives point to a need for secure data sharing, registry management, and analytics solutions. Potential products include data integration, privacy-compliant data warehousing, and clinician/patient-facing dashboards.

Awareness & Outreach As the official sponsor of Rare Disease Day and a hub for national advocacy, NORD presents opportunities for marketing partnerships, sponsored content, event platforms, and communications services aimed at broadening reach to patients, clinicians, and industry partners.

Similar companies to National Organization for Rare Disorders

National Organization for Rare Disorders Tech Stack

National Organization for Rare Disorders uses 8 technology products and services including Accessible360, Google Hosted Libraries, Microsoft Outlook, and more. Explore National Organization for Rare Disorders's tech stack below.

  • Accessible360
    Accessibility
  • Google Hosted Libraries
    Content Delivery Network
  • Microsoft Outlook
    Email
  • Element UI
    Javascript Frameworks
  • PHP
    Programming Languages
  • Google
    Search Engines
  • X-XSS-Protection
    Security
  • ZURB Foundation
    UI Frameworks

Media & News

National Organization for Rare Disorders's Email Address Formats

National Organization for Rare Disorders uses at least 1 format(s):
National Organization for Rare Disorders Email FormatsExamplePercentage
FLast@rarediseases.orgJDoe@rarediseases.org
87%
Last@rarediseases.orgDoe@rarediseases.org
12%
First.Last@rarediseases.orgJohn.Doe@rarediseases.org
1%

Frequently Asked Questions

What is National Organization for Rare Disorders's phone number?

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You can contact National Organization for Rare Disorders's main corporate office by phone at . For more prospecting data, LeadIQ has access to up-to-date and accurate contact information within our platform. Find, capture, and sync contact data to your CRM and sales tools in one click.

What is National Organization for Rare Disorders's official website and social media links?

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National Organization for Rare Disorders's official website is rarediseases.org and has social profiles on LinkedIn.

How much revenue does National Organization for Rare Disorders generate?

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As of July 2026, National Organization for Rare Disorders's annual revenue is estimated to be $100M - $250M.

What is National Organization for Rare Disorders's SIC code NAICS code?

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National Organization for Rare Disorders's SIC code is 7299 - Miscellaneous Personal Services, Not Elsewhere Classified NAICS code is 813 - Religious, Grantmaking, Civic, Professional, and Similar Organizations.

How many employees does National Organization for Rare Disorders have currently?

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As of July 2026, National Organization for Rare Disorders has approximately 193 employees across 4 continents, including North AmericaAsiaEurope. Key team members include Chief Strategy And Operations Officer: K. E.Chief Medical And Scientific Officer: E. N.Vice President Of Corporate Relations: J. C.. Explore National Organization for Rare Disorders's employee directory with LeadIQ.

What industry does National Organization for Rare Disorders belong to?

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National Organization for Rare Disorders operates in the Non-profit Organizations industry.

What technology does National Organization for Rare Disorders use?

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National Organization for Rare Disorders's tech stack includes Accessible360Google Hosted LibrariesMicrosoft OutlookElement UIPHPGoogleX-XSS-ProtectionZURB Foundation.

What is National Organization for Rare Disorders's email format?

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National Organization for Rare Disorders's email format typically follows the pattern of FLast@rarediseases.org. Find more National Organization for Rare Disorders email formats with LeadIQ.

When was National Organization for Rare Disorders founded?

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National Organization for Rare Disorders was founded in 1983.
National Organization for Rare Disorders logo

National Organization for Rare Disorders

Non-profit OrganizationsConnecticut, United States51-200 Employees

The National Organization for Rare Disorders (NORD) is an independent nonprofit that supports individuals affected by rare diseases and the networks that assist them. It coordinates a broad alliance of more than 350 patient organizations and pursues education, advocacy, research, and patient support to advance identification, treatment, and, where possible, cures. NORD engages a wide range of stakeholders, including patients, families, researchers, clinicians, medical students, and companies developing orphan products.

Based in Danbury, Connecticut, NORD works with U.S. government agencies such as the NIH and FDA to advance policy and resources for the rare-disease community. In June 2026, the Facial Pain Registry reached its one-year anniversary, a patient data initiative developed in partnership with NORD on the IAMRARE platform.

Section iconCompany Overview

Phone number
SIC Code
7299 - Miscellaneous Personal Services, Not Elsewhere Classified
NAICS Code
813 - Religious, Grantmaking, Civic, Professional, and Similar Organizations
Founded
1983
Employees
51-200

Section iconFunding & Financials

  • $100M - $250M

    National Organization for Rare Disorders's revenue is estimated to be in the range of $100M - $250M

Section iconFunding & Financials

  • $100M - $250M

    National Organization for Rare Disorders's revenue is estimated to be in the range of $100M - $250M

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