NORD PRIVACY POLICY
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®) Privacy Statement
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.
Media
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.
Cookies
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.
Additional Information on Data Security and Donor Privacy
Donor Data Privacy, Storage, & Protection
NORD employs PCI-compliant third-party vendors, such as Classy, to process transactions and securely store donor information. For more details on how Classy protects your information, please visit Classy Security. We do not store sensitive payment data like credit card numbers on our systems, ensuring your financial data is protected against unauthorized access.
Personal financial information in the form of a credit card number and expiration date are only collected if a site user wishes to make an online donation through this website. This information is not maintained by NORD when entered online. All online transactions are securely transmitted using SSL encryption.
NORD values your privacy. We do not share your information with outside parties. We are committed to maintaining the trust you place in us by handling your personal information with respect and confidentiality.
Donor Data Privacy Choices
Donors have the right to review, update, and manage their personal data. If you wish to access your information or have any questions about how your information is handled, please contact us at [email protected]. We are committed to providing prompt and transparent responses to your inquiries.
Should there be any changes to these practices, we will communicate these changes clearly on our website and notify you directly where applicable. NORD adheres to all applicable laws and regulations regarding data protection and privacy. This includes fulfilling requirements under local, state, and international privacy laws applicable to our donors, such as the GDPR for European residents.
How We Use Your Data
Fundraising
We use Personal Information to process donations and purchase transactions, including to verify identity and/or contact you for the purpose of raising money for NORD, to determine the effectiveness of fundraising campaigns and mission activities, and to send you a receipt and/or thank you for your donation.
Data Analytics
We use Personal Information to conduct data analytics so that we can better understand the individuals we serve, better communicate with you, improve our Services, and gain a greater understanding of rare disease, rare disease treatment and the related needs of patients and their caregivers and our constituents. This analysis can help us improve patient experiences, mission delivery, and support.
Communicating with You
We may use Personal Information to communicate with you, including sending emails, newsletters, or additional content to market our Services; responding to your questions and comments; and to update you about changes to your account.
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: https://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.
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.
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)
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: mailto:[email protected]
