Insights

Expanding Stakeholder Engagement NORD engages a broad network of over 350 patient organizations, medical professionals, researchers, and industry partners, presenting opportunities to offer targeted support services, educational content, and partnership programs that can enhance stakeholder collaboration and resource sharing.

Recent Advocacy and Research Initiatives With ongoing collaborations on rare disease research and policy advocacy, such as the Moebiussyndrome partnership and the State Report Card launch, there is a demand for specialized tools, data management solutions, and research support platforms to streamline efforts and amplify impact.

Event and Campaign Engagement NORD's active participation in high-profile events like the Rare Diseases & Orphan Products Breakthrough Summit and International Conferences indicates openings for event technology, sponsorship, and patient engagement platforms to expand reach and effectiveness.

Funding and Revenue Growth With a revenue range of 100 to 250 million dollars, NORD is a significant funding entity, creating opportunities for partnerships with technology providers, fundraising platforms, and grant management solutions tailored to large-scale nonprofit organizations.

Regulatory and Education Programs Recent initiatives like training programs for U.S. patients and the annual State Report Card point to a need for digital education tools, data analytics, and regulatory compliance solutions that can support NORD’s mission to enhance patient access and awareness on a broad scale.

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 UserWay, jsDelivr, Cloudflare, and more. Explore National Organization for Rare Disorders's tech stack below.

  • UserWay
    Accessibility
  • jsDelivr
    Content Delivery Network
  • Cloudflare
    Content Management System
  • Classy
    Fundraising And Donation Management
  • Swiper
    Javascript Libraries
  • Cloudflare Bot Management
    Security
  • Wrike
    Team Collaboration
  • mOxie
    Web & Portal Technology

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
46%
Last@rarediseases.orgDoe@rarediseases.org
7%
First.Last@rarediseases.orgJohn.Doe@rarediseases.org
1%
FLast@rarediseases.orgJDoe@rarediseases.org
46%

Frequently Asked Questions

Where is National Organization for Rare Disorders's headquarters located?

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National Organization for Rare Disorders's main headquarters is located at 55 Kenosia Avenue Danbury, Connecticut 06810 United States. The company has employees across 3 continents, including North AmericaEuropeAsia.

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.

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 February 2026, National Organization for Rare Disorders has approximately 189 employees across 3 continents, including North AmericaEuropeAsia. Key team members include Chief Executive Officer: P. G.Chief Strategy And Operations Officer: K. E.Chief Medical And Scientific Officer: E. N.. 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 UserWayjsDelivrCloudflareClassySwiperCloudflare Bot ManagementWrikemOxie.

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

Non-profit OrganizationsConnecticut, United States51-200 Employees

The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is an independent patient advocacy organization dedicated to helping individuals with rare diseases and the organizations that serve them. NORD, along with its 350+ patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient support services.

NORD serves all stakeholders in the rare disease community, including patients and their families, patient organizations, researchers, medical professionals, medical students, and companies developing orphan products. 

NORD also works closely with many government agencies, most notably the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). 

All NORD programs are focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases. 

NORD is the official U.S. sponsor of Rare Disease Day, an international observance day held on the last day of February each year. Its goals are to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. To learn more, visit rarediseases.org/rare-disease-day.

To learn more, please visit the NORD website at www.rarediseases.org. You can also follow NORD on X at @RareDiseases.

Section iconCompany Overview

Headquarters
55 Kenosia Avenue Danbury, Connecticut 06810 United States
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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