Last modified: July 26, 2025
Introduction
We at Rare Disease Network respect your privacy and are committed to protecting it through our compliance with this policy.
This policy describes the types of information we may collect from you or that you may provide when you visit the website rarediseasenetworkmi.org and our practices for collecting, using, maintaining, protecting, and disclosing that information.
This policy applies to information we collect:
• On this Website.
• In email, text, and other electronic messages between you and this Website.
• Through mobile and desktop applications you download from this Website, which provide dedicated non-browser-based interaction between you and this Website.
• When you interact with our applications on third-party websites and services, if those applications include links to this policy.
It does not apply to information collected by:
• Us offline or through any other means, including on any other website operated by Company or any third party; or
• Any third party, including through any application or content (including advertising) that may link to or be accessible from or on the Website.
Please read this policy carefully to understand our policies and practices regarding your information and how we will treat it. If you do not agree with our policies and practices, your choice is not to use our Website. By accessing or using this Website, you agree to this privacy policy. This policy may change from time to time (see Changes to Our Privacy). Your continued use of this Website after we make changes is deemed to be acceptance of those changes, so please check the policy periodically for updates.
Children Under the Age of 16
Our Website is not intended for children under 16 years of age. No one under age 16 may provide any information to or on the Website. We do not knowingly collect personal information from children under 16. If you are under 16, do not use or provide any information on this Website or through any of its features. If we learn we have collected or received personal information from a child under 16 without verification of parental consent, we will delete that information. If you believe we might have any information from or about a child under 16, please contact us at [email protected].
Information We Collect About You and How We Collect It
We collect several types of information from and about users of our Website, including information:
• By which you may be personally identified, such as name, postal address, e-mail address, telephone number, connection to rare disease, or other information sent to us via email or “contact us” form (e.g., event feedback or content suggestions);
• That is about you but individually does not identify you, such as age, ethnicity, or gender; and/or
• About your internet connection, the equipment you use to access our Website, and usage details.
We collect this information:
• Directly from you when you provide it to us.
• Automatically as you navigate through the site. Information collected automatically may include usage details, IP addresses, and information collected through cookies and other tracking technologies.
• From third parties, for example, our business partners.
Information You Provide to Us
The information we collect on or through our Website may include:
• Information that you provide by filling in forms on our Website. This includes information provided at the time of registering to use our Website or for programs and events, when making donations, or when requesting further services. We may also ask you for information when you report a problem with our Website.
• Records and copies of your correspondence (including email addresses), if you contact us.
• Your responses to surveys that we might ask you to complete for research purposes.
• Your search queries on the Website.
Information We Collect Through Automatic Data Collection Technologies
As you navigate through and interact with our Website, we may use automatic data collection technologies to collect certain information about your equipment, browsing actions, and patterns, including:
• Details of your visits to our Website, including traffic data, location data, logs, and other communication data and the resources that you access and use on the Website.
• Information about your computer and internet connection, including your IP address, operating system, and browser type.
We also may use these technologies to collect information about your online activities over time and across third-party websites or other online services (behavioral tracking). Click here [Insert link] for information on how you can opt out of behavioral tracking on this website and how we respond to web browser signals and other mechanisms that enable consumers to exercise choice about behavioral tracking.]
The information we collect automatically may include personal information, or we may associate it with personal information we collect in other ways or receive from third parties. It helps us to improve our Website and to deliver a better and more personalized service, including by enabling us to:
• Estimate our audience size and usage patterns.
• Store information about your preferences, allowing us to customize our Website according to your individual interests.
• Speed up your searches.
• Recognize you when you return to our Website.
The technologies we use for this automatic data collection may include:
• Cookies (or browser cookies). A cookie is a small file placed on the hard drive of your computer. You may refuse to accept browser cookies by activating the appropriate setting on your browser. However, if you select this setting you may be unable to access certain parts of our Website. Unless you have adjusted your browser setting so that it will refuse cookies, our system will issue cookies when you direct your browser to our Website.
• Flash Cookies. Certain features of our Website may use local stored objects (or Flash cookies) to collect and store information about your preferences and navigation to, from, and on our Website. Flash cookies are not managed by the same browser settings as are used for browser cookies. For information about managing your privacy and security settings for Flash cookies, see Choices About How We Use and Disclose Your ·.
• Web Beacons. Pages of our the Website [and our e-mails] may contain small electronic files known as web beacons (also referred to as clear gifs, pixel tags, and single-pixel gifs) that permit the Company, for example, to count users who have visited those pages or [opened an email] and for other related website statistics (for example, recording the popularity of certain website content and verifying system and server integrity).
We do not collect personal information automatically, but we may tie this information to personal information about you that we collect from other sources or you provide to us.]
[Some content or applications, including advertisements, on the Website are served by third parties, including advertisers, ad networks and servers, content providers, and application providers. These third parties may use cookies [alone or in conjunction with web beacons or other tracking technologies] to collect information about you when you use our website. The information they collect may be associated with your personal information or they may collect information, including personal information, about your online activities over time and across different websites and other online services. They may use this information to provide you with interest-based (behavioral) advertising or other targeted content.
We do not control these third parties’ tracking technologies or how they may be used. If you have any questions about an advertisement or other targeted content, you should contact the responsible provider directly. For information about how you can opt out of receiving targeted advertising from many providers, see Choices About How We Use and Disclose Your Information.]
How We Use Your Information
We use information that we collect about you or that you provide to us, including any personal information:
• To present our Website and its contents to you.
• To provide you with information and updates, facilitate program or event registrations, provide connections to support organizations and resources if requested, and to support tax reporting.
• To assist in our fundraising and grant application efforts, where aggregated (non personalized) information may be used.
• To fulfill any other purpose for which you provide it.
• To notify you about changes to our Website or any programs, events or services we offer or provide through it.
• In any other way we may describe when you provide the information.
• For any other purpose with your consent.
Disclosure of Your Information
We may disclose aggregated information about our users, and information that does not identify any individual, without restriction.
We may disclose personal information that we collect or you provide as described in this privacy policy:
• To contractors, service providers, and other third parties we use to support our business[ and who are bound by contractual obligations to keep personal information confidential and use it only for the purposes for which we disclose it to them].
• To provide donation gift receipts.
• To fulfill the purpose for which you provide it.
• For any other purpose disclosed by us when you provide the information or to which you have provided consent.
We may also disclose your personal information:
• To comply with any court order, law, or legal process, including to respond to any government or regulatory request.
• To enforce or apply our terms of use and other agreements.
• If we believe disclosure is necessary or appropriate to protect the rights, property, or safety of the Company, our supporters, or others
Choices About How We Use and Disclose Your Information
We strive to provide you with choices regarding the personal information you provide to us. We have created mechanisms to provide you with the following control over your information:
Tracking Technologies and Advertising. You can set your browser to refuse all or some browser cookies, or to alert you when cookies are being sent. To learn how you can manage your Flash cookie settings, visit the Flash player settings page on Adobe’s website. If you disable or refuse cookies, please note that some parts of this site may then be inaccessible or not function properly.
We do not control third parties’ collection or use of your information to serve interest-based advertising. However, these third parties may provide you with ways to choose not to have your information collected or used in this way.
California residents may have additional personal information rights and choices.
Accessing and Correcting Your Information
You can review and change your personal information by logging into the Website and visiting your account profile page, or by sending us an email at [email protected] to request access to, correct or delete any personal information that you have provided to us. We cannot delete your personal information except by also deleting your user account. We may not accommodate a request to change information if we believe the change would violate any law or legal requirement or cause the information to be incorrect.
Data Security
Unfortunately, the transmission of information via the internet is not completely secure. Although we do our best to protect your personal information, we cannot guarantee the security of your personal information transmitted to our Website. Any transmission of personal information is at your own risk. We are not responsible for circumvention of any privacy settings or security measures contained on the Website.
Changes to Our Privacy Policy
It is our policy to post any changes we make to our privacy policy on this page. If we make material changes to how we treat our users’ personal information, we will notify you through a notice on the Website home page. The date the privacy policy was last revised is identified at the top of the page. You are responsible for periodically visiting our Website and this privacy policy to check for any changes.
Contact Information
To ask questions or comment about this privacy policy and our privacy practices, contact us at: [email protected].
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