NORDCentral®

NORDCentral® Privacy Policy

Privacy Policy

Last Updated: June 12, 2025

NORD, the National Organization for Rare Disorders (“NORD”, “we”, “our”, or “us”) is committed to protecting your personal information, being transparent about what data we hold, and giving you control over how we use it. This Privacy Policy explains how NORD collects, uses, and discloses information that identifies or can be used to identify a natural person (“Personal Information”). We may obtain Personal Information directly from you when you interact with us online at https://nordcentral.org/ (our “Platform”) or when you engage with us in other ways, including by email, phone, mail, or in person.

This Privacy Policy is incorporated into and made part of our Terms of Use (“Terms”). By accessing and using the Platform, you agree and consent to the collection, use, processing, and disclosure of your Personal Information as outlined in this Privacy Policy. This Privacy Policy may change from time to time, and we will post any changes to our Platform. If you have any questions about this Privacy Policy or the Terms, please contact us using the contact information located in the Contact Us section below.

PLEASE NOTE: NORD does not diagnose or treat any disease or disorder. NORD does not recommend or endorse any particular medical treatment but encourages patients to seek the advice of their clinicians.

Personal Information We Collect

Information You Provide to Us

Examples of Personal Information that we collect directly from you may include:

  • Contact Information, such as your prefix and full name, email address, phone number, and any other unique personal identifier you choose to provide to us.
  • Professional Information, including educational, professional, and volunteer information such as professional credentials, job title, clinical specialties, clinical subspecialties, non-clinical degrees, languages spoken, rare disease expertise, and clinical and research interests.
  • Other Information You Choose to Provide, such as when you complete an application or registration form, interact with the Platform, or otherwise engage with us, including by email, phone, mail, or in person.

NORDCentral® does not collect identifiable personal health information or other health or medical information about individuals. NORDCentral® does not collect or maintain information that would associate a submission with a specific patient. Please do not disclose or post anything that would allow a patient to be identified, such as non-anonymized medical records. If you post any identifiable personal health information about an individual, or notice another Platform user has, please inform us so that such information can be removed from the Platform or redacted by NORD.

Information We Collect Automatically When You Use the Platform

  • Log Information: When you visit the Platform, our servers automatically record certain log file information, such as your IP address, operating system, browser type and language, referring URLs, access times, pages viewed, links clicked, and other information about your activities on the Platform.
  • Information Collected by Cookies and Other Tracking Technologies: We and our service providers use cookies, web beacons, and similar technologies to collect information about you when you interact with our Platform. Cookies help us improve the Platform and your experience, see which areas are popular, and count visits. Web beacons help deliver cookies, count visits, and understand usage and campaign effectiveness. For more information about cookies and how to disable them, see Cookies and Advertising and Analytics Services below.

How We Use Personal Information

  • Set up, validate, and administer your account on our Platform.
  • Provide, maintain, plan, and improve our Platform, programs, services, and participant network.
  • Process registrations, applications, or requests for information.
  • Monitor and analyze trends, usage, and activities in connection with our Platform, including to conduct data analytics to better understand the individuals we serve, improve our services, and gain a greater understanding of rare disease, rare disease treatment, and related needs.
  • Communicate with you about talks, workshops, and other events, products, or services, and provide news and information we think will be of interest to you.
  • Help you engage with other individuals with similar interests to help mobilize people, organizations, and networks for public good.
  • Send technical notices, updates, security alerts, and support or administrative messages.
  • Respond to comments, questions, and requests, and provide customer service.
  • Detect, investigate, and prevent fraudulent transactions and other illegal activities, and protect the rights and property of NORD and others.
  • Maintain appropriate records for internal administrative purposes.
  • Carry out any other purpose described to you at the time the information was collected.

We may also de-identify and aggregate the information that we collect so it can no longer reasonably be linked to the identity of a person.

We may update Personal Information with your permission if we learn that the information is out of date and updated information is available.

How We Share Personal Information

We may share Personal Information as follows (or as otherwise described in this Privacy Policy):

  • With other Platform users and your NORD RD CoE Director(s). If you participate in one of our forums, we may also use your name and image in promotional materials with your express permission.
  • With temporary contractors and service providers who need access to such information to carry out work or perform services on NORD’s behalf.
  • In response to requests from law enforcement officials or any judicial/administrative proceeding or order (e.g., a subpoena), if we believe disclosure is in accordance with applicable law.
  • To protect the rights, property, and safety of NORD and others.
  • To investigate suspected violations of our terms or policies, fraud, harassment, physical threats, or other violations of any law, rule, regulation, or rights of third parties.
  • In connection with any merger, financing, or acquisition of all or a portion of our business.
  • Between and among NORD and our current and future parents, affiliates, subsidiaries, and other companies under common control and ownership.
  • With your consent or at your direction.
  • To comply with transparency or other public reporting obligations.
  • As otherwise permitted or required by law.

We may also share aggregated or de-identified information. NORD will never share, sell, rent, or trade your Personal Information to any third parties for marketing purposes without your prior consent.

Children’s Privacy

Our Platform is not intended for or designed to attract children. We do not knowingly collect Personal Information from any person known by NORD to be under the age of 13.

Security and Retention

We use reasonable physical, technical, and administrative measures designed to protect personal information. No system can be guaranteed to be 100% secure. If you believe your interaction with us is no longer secure, please notify us immediately (see Contact Us).

Your Personal Information will be retained for as long as you maintain a relationship with us and afterwards in accordance with our legal and regulatory obligations. If you submit a comment in a forum, the comment and its metadata are retained indefinitely. For users who register on the Platform, NORD also stores the Personal Information those users provide in their profile. All users can see, edit, or delete their Personal Information at any time or request deletion.

Links to Third-Party Websites

Our Platform may reference or provide links to third-party websites. Because these websites are not controlled by NORD, we are not responsible for them. We encourage you to review the privacy policies posted on other websites that may collect Personal Information. Visiting these other websites is at your own risk.

Cookies and Advertising and Analytics Services

Most web browsers are set to accept cookies by default. Where applicable, we will collect your consent using a cookie banner prior to using any cookies. If you remove or reject cookies, the availability and functionality of the Platform could be affected.

We may allow others, including Google Analytics, to provide analytics services. These entities may use cookies, web beacons, device identifiers, and other technologies to collect information about your use of the Platform and other sites/apps. To prevent Google Analytics from using your information for analytics, you may install the Google Analytics Opt-out Browser Add-on available on the Google Analytics website or by clicking here: https://tools.google.com/dlpage/gaoptout.

We do not currently recognize or respond to browser-initiated Do Not Track (DNT) signals.

Updating Your Personal Information

It is important that the personal data we hold about you is accurate and current. You may update, correct, modify, or delete information about you at any time by updating your profile information or by contacting us (see Contact Us).

Additional Notice for California Residents (California Shine the Light)

If you are a California resident, California Civil Code Section 1798.83 permits you to request information about our practices related to the disclosure of your Personal Information to certain third parties for their direct marketing purposes. NORD does not currently share Personal Information with third parties for direct marketing purposes.

Communications with NORD

We may communicate from time to time concerning our activities, events, and requests for future support. To opt out of receiving our communications, contact us (see Contact Us).

United States Only

The Platform is intended for use only in the United States. By accessing or using the Platform or otherwise providing information to us, you consent to the processing and transfer of information in and to the U.S. and other countries, where you may not have the same rights as under local law.

Contact Us

If you have any questions about this Privacy Policy or concerns about the way NORD processes your information, or require assistance in managing your privacy choices, please contact us at [email protected].