The services available through this website are provided by NORD.  Throughout the NORD Website, the terms “You” and “Your” refer to the user of the NORD Website that is acknowledging and agreeing to the terms hereof and the terms “We”, “Us” and “Our” refer to NORD.  You will not be able to access the content or submit comments and/or forms on the Website until You confirm Your agreement to Our Privacy Policy (including Our Terms and Conditions) by checking the signature box that appears at the end of this document.

The National Organization for Rare Disorders® (NORD®) has created this Privacy Statement to demonstrate its firm commitment to Your privacy.  Below You will find NORD’s information gathering and dissemination practices for NORD’s website:

PLEASE NOTE: NORD does not diagnose or treat any disease or disorder, nor does NORD process any health data.  As set forth on NORD’s Website, NORD does not recommend or endorse any particular medical treatment but encourages patients to seek the advice of their clinicians.

Comments & Form Submissions

When visitors to NORD’s Website leave comments or submit forms on the site, NORD collects the data presented in the comments and/or the form.  NORD also collects the visitors’ IP address and the browser user agent string to assist it in detecting any spam.

User Submitted Content

Your Content refers to any audio, video, text, images, or other material You provide or display.  By providing Your Content, you agree to grant NORD a license to read, use, reproduce, adapt, modify, publish, translate, and distribute the content in NORD’s marketing materials and to all media.  You agree that Your Content must be your own and must not invade or infringe any third-party’s rights.  When you submit content or information to NORD, You are allowing the public to access and use that information, and to associate it with You.  Visitor comments may be checked through an automatic spam detection service.

NORD reserves the right to remove Your Content at any time, without notice.  NORD takes Your privacy very seriously.  NORD will never sell or disclose Your personal information to any person or other third-party or to any country outside the United States.


If You upload images to the Website, You should avoid uploading images with embedded location data (EXIF GPS) included in the image.  Visitors to NORD’s Website can download and extract any location data from images on the website.


If You leave a comment on NORD’s site you may opt-in to saving your name, email address, and website in cookies.  The cookies are for Your convenience so that you do not have to fill in Your details again when you leave another comment.  The cookies will remain active for one year.

Embedded Content From Other Websites

Articles on NORD’s Website may include embedded content (e.g., videos, images, articles, etc.) from third-party websites.  Embedded content from third-party websites behaves in the exact same way as if the visitor has visited the third-party website.

Third-party websites may collect data about You, use cookies, embed additional third-party tracking, and monitor Your interaction with that embedded content, including tracking Your interaction with that embedded content if You have an account with and are logged into that third-party website.  Please Note that NORD does not endorse any information, products and/or services provided on third-party websites.

How Long We Retain Your Data

If You submit a comment, the comment and its metadata are retained indefinitely.  The reason for this is so NORD can recognize and approve any follow-up comments automatically instead of holding them in a moderation queue.

For users (if any) who register on NORD’s Website, NORD also stores the personal information those users provide in their user profile.  All users can see, edit, or delete their personal information at any time.  However, users cannot change their username.  Website administrators are also allowed to see and edit that information.

What Rights You Have Over Your Data

If You have an account on NORD’s site, or if You have left comments, You can request to receive an exported file of the personal data we hold about You, including any data You have provided to NORD.  You can also request that NORD erases any personal data NORD holds about You.  This policy does not include any data NORD is obliged to keep for administrative, legal, or security purposes.

If You are a resident of the European Union and have a complaint about our use or processing of your personal information, You have a right to lodge a complaint with a national Data Protection Authority.  Each European Union member nation has established its own Data Protection Authority; You can find out about the Data Protection Authority in Your country here:

The Nature of Personal Data NORD Collects and Why NORD Collects It

Event, Venue, and Organizer Information

If You create, submit, import, save, or publish Event, Venue, or Organizer information, such information is retained in the local database:

  1. Venue information: name, address, city, country, state, postal code, phone, website, geographical coordinates (latitude and longitude)
  2. Organizer information: name, phone, website, email
  3. Event information: website, cost, description, date, time, image

Subscription Forms and Cookies

  • Subscription Forms

If You submit a subscription form on NORD’s site You will be opting in for NORD to save your name, email address and other relevant information.  These subscriptions are used to notify You about related content, discounts & other special offers.

You can opt out or unsubscribe at any time in the future by clicking a link in the bottom of any email.

  • Cookies
Cookie Name Usage Time
pum-90405 Cookie used to prevent popup from displaying repeatedly. 1 month
pum-91121 Cookie used to prevent popup from displaying repeatedly. 1 month
pum-87521 Cookie used to prevent popup from displaying repeatedly. 1 month
pum-88513 Cookie used to prevent popup from displaying repeatedly. 1 month
pum-46933 Cookie used to prevent popup from displaying repeatedly. 1 month
pum-11443 Cookie used to prevent popup from displaying repeatedly. 1 month
pum_alm_pages_viewed Stores pages viewed to display targeted popups. 90 days
pum_alm_popup_open_counts Stores popup open count for a specific user. 90 days
pum_alm_first_activity Indicates when user first got to site. 1 day
pum_alm_last_activity Indicates users last activity. 1 day

We use anonymous cookies to prevent users from seeing the same popup repetitively in an attempt to make our users’ experience more pleasant while still delivering time-sensitive messaging.

Importing Events, Venues, and Organizers

  1. All data present within a CSV or ICS file and external URLs (for events, venues, organizers, and tickets)
  2. Import origin data (URL from where events are being imported—such as Eventbrite, MeetUp, or other compatible URL sources, and more, which can include similar, or the same data as listed above)
  3. Eventbrite Ticket information: name, description, cost, type, quantity

Please note that creating new events through the Community Events submission form, a user may need to hold a website account on this domain.  This information is retained in the local database.  It is also possible to create events anonymously if the site owner has this option enabled.

When purchasing tickets through a third-party, user data is controlled under the terms and conditions of the third-party.

API Keys

NORD makes use of certain APIs, to provide specific features.  Such APIs may include the following third-party services:  Google Maps (API key), MeetUp (OAuth token), PayPal (email, Client ID, Client Secret), Eventbrite (API key, auth URL, Client Secret), and Zoom (email, Client ID, Client Secret).

Analytics and How Long We Retain Your Data

Subscriber information is retained in the local database indefinitely for analytic tracking purposes and for future export.

Data will be exported or removed upon user’s request via the existing Exporter or Eraser.

If syncing data to a third-party service (for example, Mailchimp), data is retained there until unsubscribed or deleted.

Where We Send Your Data

NORD does not send any user data outside of NORD’s site by default.

Request a Copy of or Removal of Your Information

Please contact us: