NORD Rare Disease Database Terms of Use

Last Updated: 03/20/2025

These Terms of Use (“Terms”) govern your access to and use of the National Organization for Rare Disorders (“NORD”) Rare Disease Database, including the associated rare disease reports, disease summaries, and related content (collectively, the “Database”). By accessing, downloading, using, or distributing data from the Database, you agree to be bound by these Terms.

If you do not agree to all of these Terms, you are not authorized to access or use the Database.

1. Ownership and Intellectual Property

1.1 Proprietary Rights

The Database and its content, including but not limited to text, summaries, reports, descriptions, classifications, and any accompanying metadata, are the property of NORD, its licensors, or other third-party content providers. All rights not expressly granted in these Terms are reserved by NORD.

1.2 Trademarks

The “NORD” name, logo, and all related names, logos, product and service names, designs, and slogans are trademarks of NORD or its affiliates or licensors. You may not use such marks without NORD’s prior written permission.

2. Permitted Uses and Restrictions

2.1 Non-Commercial Use for Non-Profits and Educational Institutions

  • NORD grants non-profit organizations, academic researchers, educators, and students a limited, revocable, non-exclusive, non-transferable license to access, download, and use a limited subset of the Database for non-commercial, educational, or research purposes.

  • NORD may make available a downloadable CSV or similar data file containing a restricted portion of the Database. This limited data set may include core identifiers, disease names, and basic summaries. The specific scope and fields included will be determined by NORD at its sole discretion.

2.2 Commercial Use and Other Uses by For-Profit Entities

  • Any commercial use of the Database—including but not limited to use by pharmaceutical companies, insurers, data analytics firms, or other for-profit entities—requires prior written approval from NORD.

  • If you seek to use the Database for commercial purposes, you must submit a formal request to NORD at [Contact Information/Email], outlining the intended use, scope, duration, and expected distribution channels.

  • If approved, and upon execution of a separate commercial licensing agreement that may include fees, royalty arrangements, data sharing restrictions, and other terms as determined by NORD, you may be provided with API credentials, documentation, or other secure means of accessing the data. Access will remain subject to ongoing compliance with both these Terms and any additional terms specified in the commercial use agreement.

2.3 Prohibited Uses

  • You may not translate, sell, resell, sublicense, redistribute, or otherwise transfer the Database or any portion thereof to any third party without NORD’s explicit written consent, under the terms of said consent.

  • You may not use the Database in any manner that violates applicable laws or regulations, infringes any third-party intellectual property or privacy rights, or is in any way harmful, unlawful, or misleading.

  • You may not use automated scripts, scrapers, or bots to extract data beyond what is provided through NORD’s approved download formats or API.

3. Attribution and Citation

3.1 Attribution Requirements

When using data from the Database for research, educational, or other permitted non-commercial purposes, you agree to provide appropriate attribution to NORD. At a minimum, you must include:

  • “Source: National Organization for Rare Disorders (NORD)”

  • A link to https://rarediseases.org/ or other URL as specified by NORD.

3.2 Citations in Publications

For any published work, academic paper, presentation, or other formal dissemination of materials that rely substantially on the Database, you agree to cite NORD’s Rare Disease Database as a primary source.

4. Data Accuracy and Updates

4.1 No Warranties

While NORD strives to provide accurate, up-to-date information, the Database is provided “as is” and “as available” without warranties of any kind. NORD makes no representations or warranties regarding the completeness, accuracy, reliability, or timeliness of the data.

4.2 Updates and Revisions

NORD may update, modify, or discontinue any portion of the Database at any time without notice. You are responsible for ensuring you are working with the most current version of the data.

5. Disclaimers and Limitation of Liability

5.1 Medical Disclaimer

The Database is provided for informational and educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a qualified health provider with any questions regarding a medical condition.

5.2 Limitation of Liability

To the fullest extent permitted by law, NORD, its affiliates, and their respective officers, directors, employees, agents, and licensors shall not be liable for any direct, indirect, incidental, consequential, or punitive damages arising out of your use of or inability to use the Database.

6. Termination and Enforcement

6.1 Termination of Access

NORD reserves the right, at its sole discretion, to suspend, restrict, or terminate your access to the Database at any time for any violation of these Terms or other applicable policies.

6.2 Survival

All provisions of these Terms that by their nature should survive termination shall survive, including ownership provisions, warranty disclaimers, indemnity, and limitations of liability.

7. Governing Law and Dispute Resolution

These Terms and any disputes arising under or related to them shall be governed by and construed in accordance with the laws of [Applicable Jurisdiction], without regard to its conflicts of law principles. Any legal action or proceeding relating to these Terms shall be brought exclusively in the courts of [Applicable Jurisdiction], and you consent to the personal jurisdiction of and venue in such courts.

8. Changes to These Terms

NORD may revise these Terms at any time by updating this page. Your continued use of the Database following any changes indicates your acceptance of the modified Terms.

9. Contact Information

For questions, requests, or further information regarding the Database and these Terms, please contact:

Email: [email protected]

Address: 1900 Crown Colony Drive, Suite 310, Quincy, MA 02169