We collect the following types of information about you:
INFORMATION WE COLLECT FROM YOU DIRECTLY
Account information: You can browse our site without providing personal information, but you must register in order to access most of the features of Service. We ask for certain information such as your username, email address and password when you create a Rare Disease Foundation account, or if you correspond with us.
Data collected through the use of the service: After you set up your account, Rare Disease Foundation members may also choose to provide additional information which may be shared through public profiles, such as your name, location, website, links to your social media profiles, and other information. You control how much personally identifying information you wish to provide in your public profile.
Messages and User Content: We may retain any messages you send through the Service, and may collect information you provide in User Content you post to the Service.
We use this information to operate, maintain, and provide to you the features and functionality of the Service, as well as to communicate directly with you, such as to send you email messages. You can control your receipt of email messages by visiting “Settings” within “Edit Account Settings” page on our website. We may also send you Service-related emails (e.g. account verification, change or updates to features of the Service, technical and security notices). You may not opt-out of Service-related e-mails. For more information about your communication preferences, see “Your Choices Regarding Your Information” below.
INFORMATION WE MAY RECEIVE FROM SOCIAL NETWORKING SITES
If you create an account on our website through a third-party connection or log-in, for example through Facebook, Google+ or Twitter, or by “following,” or “liking” Rare Disease Foundation on a third party social media site, etc., that third party may pass certain information about your use of its service to Rare Disease Foundation. This information could include the user ID associated with your account (for example, your Facebook UID), an access token necessary to access that service, any information that you have permitted the third party to share with us, and any information you have made public in connection with that service. If you allow us access to your friends list, your friends’ user IDs, and your connection to those friends, may be used and stored to make your experience more social, and to allow you to invite your friends to use our Service as well as provide you with updates if and when your friends join Rare Disease Foundation. The data we receive is dependent upon your privacy settings with the social network. You should always review, and if necessary, adjust your privacy settings on third-party websites and services before linking or connecting them to the Rare Disease Foundation Service.
INFORMATION AUTOMATICALLY COLLECTED
We automatically collect certain types of usage information when you visit our website or use our Service. When you visit the Site, we may send one or more cookies — a small text file containing a string of alphanumeric characters — to your computer that uniquely identifies your browser and lets us help you log in faster and enhance your navigation through the site. A cookie may also convey information to us about how you use the Service (e.g. the pages you view, the links you click and other actions you take on the Service), and allow us to track your usage of the Service over time. We may collect log file information from your browser or mobile device each time you access the Service. Log file information may include anonymous information such as your web request, Internet Protocol (“IP”) address, browser type, information about your mobile device, referring / exit pages and URLs, number of clicks and how you interact with links on the Service, domain names, landing pages, pages viewed, and other such information. We may employ clear gifs (also known as web beacons) which are used to anonymously track the online usage patterns of our Users. In addition, we may also use clear gifs in HTML-based emails sent to our users to track which emails are opened and which links are clicked by recipients. The information allows for more accurate reporting and improvement of the Service. We may also collect analytics data, or use third-party analytics tools, to help us measure traffic and usage trends for the Service. These tools collect information sent by your browser or mobile device, including the pages you visit, your use of third party applications, and other information that assists us in analyzing and improving the Service.
When you access our Services by or through a mobile device, we may receive or collect and store a unique identification numbers associated with your device (“Device ID”), mobile carrier, device type and manufacturer, phone number, and, depending on your mobile device settings, your geographical location data, including GPS coordinates (e.g. latitude and/or longitude) or similar information regarding the location of your mobile device.
We use or may use the data collected through cookies, log file, device identifiers, location data and clear gifs information to: (a) remember information so that you will not have to re-enter it during your visit or the next time you visit the site; (b) provide custom, personalized content and information; (c) provide and monitor the effectiveness of our Service; (d) monitor aggregate metrics such as total number of visitors, traffic, usage, and demographic patterns on our website and our Service; (e) diagnose or fix technology problems; and (f) otherwise to plan for and enhance our service. We may associate information we automatically collect with your other information.
How We Share Your Information With Others
We may share your personal information in the instances described below. For further information on your choices regarding your information, see the “Your Choices Regarding Your Information” section below.
We may share your personal information with:
Other companies owned by or under common ownership as Rare Disease Foundation, which includes our subsidiaries (i.e., any organization we own or control) or our ultimate holding company (i.e., any organization that owns or controls us) and any subsidiaries it owns. These companies will use your personal information in the same way as we can under this Policy;
Third party vendors, consultants, contractors and other service providers that perform services on our behalf, in order to carry out their work for us, which may include content or service fulfillment, accounting, or providing analytics services;
Third parties at your request. Any information or content that you voluntarily disclose for posting to the Service, such as User Content, becomes available to the public and/or to other Rare Disease Foundation members, as controlled by any applicable privacy settings. Additionally, you may have the option to share your activities on our Services with your friends through social media. Rare Disease Foundation does not have control over your information shared with third party social networks and you should review the policies of those networks before consenting to share information;
Other parties in connection with any company transaction, such as a merger, sale of company assets or shares, reorganization, financing, change of control or the acquisition of all or a portion of our business by another company or third party or in the event of bankruptcy or related or similar proceedings. Your information, such as user names and email addresses, User Content and other user information may be among the items sold or otherwise transferred in these types of transactions; and
We may also share information with others in an aggregated and anonymous form that does not reasonably identify you directly as an individual.
Your Choices About Your Information
Profile data. You can change your profile settings by visiting “Edit Account” to control whether your profile can be seen by Rare Disease Foundation members or by the general public.
Communications. You can control your communication preferences by visiting “Mail Settings” in the “My Account” section of our website. You can also click the “unsubscribe” button on promotional email communications. Note that you are not permitted to unsubscribe or opt-out of non-promotional messages regarding your account, such as account verification, password requests, change or updates to features of the Service, or technical and security notices.
We will retain your information for as long as your account is active or as needed to provide you services. If your account becomes inactive, we will maintain your personal information in the event you wish to re-engage in our Service. You may delete your account by visiting the “My Account” page.
If you have any questions about reviewing or modifying your account information, you can contact us directly at email@example.com.
How We Store And Protect Your Information
Keeping your information safe: Rare Disease Foundation cares about the security of your information and uses commercially reasonable safeguards to preserve the integrity and security of all information collected through the Service. However, no security system is impenetrable and we cannot guarantee the security of our systems 100%. In the event that any information under our control is compromised as a result of a breach of security, we will take reasonable steps to investigate the situation and where appropriate, notify those individuals whose information may have been compromised and take other steps, in accordance with any applicable laws and regulations. Your privacy settings may also be affected by changes to the functionality of third party sites and services that you add to the Rare Disease Foundation Service, such as social networks. Rare Disease Foundation is not responsible for the functionality or security measures of any third party.
Our Service is not directed at children under the age of 13 and we do not knowingly collect or solicit information from anyone under the age of 13. In the event that we learn that we have collected personal information from a child under age 13 without parental consent, we will delete that information as quickly as possible. If you believe that we might have any information collected from a child under 13, please contact us at firstname.lastname@example.org.
Links to Other Websites and Services
The Services may, from time to time, contain links to and from third party websites. If you follow a link to any of these websites, please note that these websites have their own privacy policies and that we do not accept any responsibility or liability for their policies. Please check the individual policies before you submit any information to those websites.
What personal data does Rare Disease Foundation collect and store, and for what purposes?
Rare Disease Foundation collects the following data:
- Mandatory data – Rare Disease Foundation collects your First Name, Email address, IP Address. This data is used in communications, user tracking, advertising, marketing and to derive product insights.
- Optional data – Rare Disease Foundation also allows you to enter your gender, a username, avatar photo, and links to your github, facebook, twitter, and personal websites. This data is optional and not used in any automated processing or profiling.
Where can I find a list of Rare Disease Foundation’s subprocessors?
Here is a non-exclusive list of our subprocessors and what they are used for. This list is subject to change as our business evolves.
Subprocessor Name- Nature of Processing:
- Digital Ocean Storage and archival of Codecademy user data and metadata.
- Github Repository of software code used to implement Looker software deployments.
- Google Authentication, business management, tracking.
May I opt out of Rare Disease Foundation Communications?
Yes. We retain basic user contact information to communicate with our customers and their users about product and security updates, relevant marketing, training and events. Rare Disease Foundation users may opt-out of communications here.
Where does Rare Disease Foundation host customer data?
Looker-hosted instances are hosted in the Amazon Web Services cloud. By default, Rare Disease Foundation hosts in the Ohio and Virginia (US) regions.
How Can I Edit my Rare Disease Foundation Data?
You can edit your data at any time from your profile page here.
How long does Rare Disease Foundation retain Customer Data? Will Rare Disease Foundation delete customer data when requests?
Rare Disease Foundation maintains all customer data until we mark users as “non-active” or a customer deletes their own account. User can delete their own accounts and data here.
How Can I download my Rare Disease Foundation Data?
Our customer support team will be happy to help you here. You can reach them via this form.
How to Contact Us