NORDCentral®

Terms of Use

Terms of Use

Last Updated: June 12, 2025

These Terms of Use (“Terms”) apply to you, the individual accessing or using the NORD Rare Disease Centers of Excellence (“NORD RD CoE”) network’s intranet and collaboration platform currently known as NORDCentral® and available at https://nordcentral.org/ (“Platform”), and form a binding agreement between you and National Organization for Rare Disorders, Inc. (“NORD”) effective as of the date you first access or use the Platform. Your use of the Platform is also subject to NORD’s Privacy Policy (“Privacy Policy”), which is incorporated into these Terms.

Please carefully read these terms before accessing or using the Platform. These Terms contain limitations of liability, disclaimers of warranties, and a waiver of your and NORD’s right to participate in a jury trial or class action claim. By accessing or using the Platform, you agree to these Terms and you represent and warrant that you are at least the age of majority in your country of residence and have authority to enter into these Terms.

1. Permitted Purpose

You may only use and access the Platform for the purposes of facilitating rare disease-related non-commercial collaboration and data sharing among clinicians, researchers, or other healthcare-related professionals affiliated with a NORD RD CoE (“Permitted Purpose”).

2. Authorization to Use

You represent and warrant that you are affiliated with a NORD RD CoE and involved in diagnosis, treatment, management, and/or research of rare diseases at your institution. Your access and use of the Platform is at the discretion of your NORD RD CoE Director(s) and NORD and may be revoked at any time. If you are no longer affiliated with a NORD RD CoE or your authorization is revoked, you must promptly notify NORD and cease all use and access to the Platform. Personal information you provide may be retained as described in the Privacy Policy.

3. Use Restrictions

You will not (and will not authorize or permit any other party to):

  1. Use or access the Platform, including any Platform Data, for any commercial purposes.
  2. Scrape or otherwise use automated methods to access or save any Platform Data.
  3. Post copyrighted content to the Platform without authorization or use the Platform/Platform Data to violate any laws or intellectual property rights.
  4. Reverse engineer, decompile, or otherwise obtain the source code or algorithms underlying the Platform.
  5. Sell or rent any Platform Data or your access to the Platform.
  6. Copy, reproduce, modify, or make derivative works of the Platform.
  7. Introduce any malware, viruses, or similar code into the Platform.
  8. Otherwise use the Platform or Platform Data in violation of these Terms or for any purpose other than the Permitted Purpose.

4. Platform Data

Data accessible from or contained in the Platform (“Platform Data”), such as names, contact information, professional experience, credentials, research interests, and specializations, is voluntarily made available to NORD by Platform users. NORD is not responsible for the Platform Data’s accuracy, currency, or completeness. You may be required to provide Platform Data about yourself and may optionally submit other Platform Data (e.g., medical articles, patient education resources, event information, research study information, statistical data). You are responsible for ensuring the Platform Data you provide is accurate to the best of your knowledge at the time of submission.

5. Security

You may not share your Platform account credentials and will use reasonable efforts to ensure they remain secure. If you become aware of any compromise to your credentials or any actual or suspected compromise of the Platform or Platform Data, notify NORD as soon as practicable. NORD may suspend your account without notice if it reasonably believes your account is compromised or presents a security risk.

6. No Identifiable Health Data

NORD does not collect or maintain identifiable personal health data or other health or medical data about individuals. You may not disclose or post anything that would allow a patient to be identified, such as non-anonymized medical records. If you post or become aware of such data on the Platform, inform NORD as soon as practicable so it can be removed or redacted.

7. Ownership of Platform

NORD retains sole and exclusive ownership of the Platform and related systems. You do not acquire any ownership or other rights (other than a limited right to use the Platform for the Permitted Purpose).

8. Feedback

If you choose to provide feedback or suggestions to improve the Platform, you grant NORD and its authorized representatives a worldwide, royalty-free, non-exclusive license to use the feedback or suggestions for Platform improvement.

9. Indemnification

You agree to indemnify and hold harmless NORD and its affiliates from and against any judgment, liability, cost, expense, damage, or other loss (including reasonable attorneys’ fees) to the extent arising from any third-party claim based on: (i) your breach of these Terms; (ii) your fraud, gross negligence, or intentional misconduct; or (iii) any Platform Data you made available to the Platform or NORD.

10. Limitations of Liability

In no event will NORD or any of its affiliates be responsible or liable for any punitive, consequential, incidental, special, remote, exemplary, collateral, speculative, or indirect damages of any kind (including lost profits/revenue, loss of business, or loss of opportunity) arising from or in connection with these Terms or the Platform, including all Platform Data. The total aggregate liability of NORD and its affiliates for any losses arising from or in connection with these Terms or the Platform will not exceed ten dollars (US $10).

11. Disclaimer of Warranties

NORD makes no representations or warranties of any kind, express, implied, statutory, or otherwise with respect to the Platform, including the Platform Data. All implied warranties (including satisfactory quality, performance, merchantability, fitness for a particular purpose, and non-infringement) are disclaimed to the maximum extent permitted by law. The Platform and Platform Data are provided “as-is”.

12. Termination

You may stop using the Platform at any time. NORD may suspend or terminate your access upon written notice if: (i) you breached these Terms; (ii) you are no longer affiliated with a NORD RD CoE or authorized to use the Platform by a NORD RD CoE; or (iii) NORD must do so to comply with applicable laws or regulations.

13. Third-Party Links

The Platform may contain links to websites, mobile apps, software, social media platforms, or other content maintained by third parties (“Third-Party Websites”). Such links are provided as a convenience. NORD makes no warranties or representations regarding Third-Party Websites. Your use of any Third-Party Websites is at your own risk and governed by applicable third-party terms and policies.

14. Claims of Copyright Infringement

In accordance with the Digital Millennium Copyright Act (DMCA), NORD will promptly respond to notices of alleged copyright infringement that are reported to NORD’s Designated Agent. NORD reserves the right to delete or disable content alleged to be infringing. To report alleged infringements, send a signed notice including: (i) the copyrighted work claimed to be infringed; (ii) the material claimed to be infringing and information sufficient to locate it; (iii) your mailing address, telephone number, and (if available) email address; (iv) a statement that you believe there is no good-faith basis for the disputed use to have been authorized; and (v) your full legal name and the full legal name of any copyright holder you represent. Notices should be sent to: [email protected].

15. Trademarks

The names, logos, and other trademarks of NORD, NORD RD CoE, and other third parties that may appear on the Platform (such as NORDCentral®) are trademarks of NORD, its affiliates, or other third parties. These Terms do not grant you any right to use these trademarks. You may not use them for marketing or advertising unless expressly authorized in writing by the trademark owner. You may make factually accurate statements regarding your affiliation with a NORD RD CoE.

16. Jury Trial and Class Action Waiver

With respect to any claims arising under these Terms or your use of the Platform, each of you and NORD waives any right to a trial by jury or to participate as a plaintiff or class member in any purported class action or other representative proceeding, and agree that no court or decision-making authority may consolidate such claims into a class or representative proceeding.

17. Amendments

NORD reserves the right to change these Terms or the Platform at any time. NORD will post any such changes to the Platform and will use commercially reasonable efforts to notify you of any material changes. It is your responsibility to periodically check the Platform so that you are aware of the current Terms. Your continued use of the Platform constitutes acceptance of any amended Terms.