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: https://rarediseases.org.
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.
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: http://ec.europa.eu/justice/article-29/structure/data-protection-authorities/index_en.htm.
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:
- Venue information: name, address, city, country, state, postal code, phone, website, geographical coordinates (latitude and longitude)
- Organizer information: name, phone, website, email
- 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.
|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
- All data present within a CSV or ICS file and external URLs (for events, venues, organizers, and tickets)
- 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)
- 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.
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: https://rarediseases.org/email:nord/?dept=web