Privacy Policy and Cookies Usage Policy

The following terminology applies to the Privacy Policy, Cookies Policy, and any or all Agreements: “You” and “Your” refers to you, the person accessing this website and accepting the Organization’s terms and conditions. “MSU”, “Understanding Myositis”, “Myositis Support and Understanding”, “Ourselves”, “We” and “Us”, refer to our Organization, Myositis Support and Understanding. “The Site”, “website”, and “site”, refer to our website located at www.UnderstandingMyositis.org. Any use of the above terminology or other words in the singular, plural, capitalization and/or he/she or they, are taken as interchangeable and therefore as referring to the same.

PRIVACY POLICY

Types of information we collect

Personally Identifiable Information

We only collect Personally Identifiable Information (“PII”) via our site when you register for your free membership account. Then, your personal information is secure within your account section of the site and you control each field’s privacy.

Myositis Support and Understanding collects personally identifiable information (PII) in the registration section, such as name, address, type of Myositis and e-mail address. If for any reason you wish to update/correct your PII, please log in to your account on the website and visit the “My Account” page.

Non-Personally Identifiable Information

We collect Non-Personally Identifiable Information (“Non-PII”) via our site, including but not limited to your IP host address, pages viewed, browser type, the referring URL, Internet Service Provider, and your computer’s operating system. The information we collect cannot be tied to a particular user of our site and is only collected to help us offer the best possible site content.

Myositis Support and Understanding may collect and use the following kinds of personal information:

  • Information about your use of the site, collected anonymously, for performance monitoring
  • Information that you provide for the purpose of registering for membership with the site
  • Information about transactions carried out over the site
  • Information that you provide for the purpose of subscribing to the site’s services including e-mail and newsletter updates

Where Myositis Support and Understanding discloses your personal information to its agents or sub-contractors for these purposes, the agent or sub-contractor in question will be obligated to use that personal information in accordance with the terms of this privacy policy.

In addition to the disclosures reasonably necessary for the purposes identified elsewhere above, Myositis Support and Understanding may disclose your personal information to the extent that it is required to do so by law, in connection with any legal proceedings or prospective legal proceedings, and in order to establish, exercise or defend its legal rights.

IP addresses

MSU uses your IP address to help diagnose problems with our server, to administer our website, and for statistical metrics used to track website visitor traffic.

What do we use your information for?

The information we collect from you may be used in the following ways:

  • To Administer this website
  • To create your membership account
  • To personalize your experience (your information helps us to better respond to your individual needs)
  • To improve our website (we continually strive to improve our website offerings based on the information and feedback we receive from you)
  • To improve customer service (your information helps us to more effectively respond to your customer service requests and support needs)
  • To process transactions, donations, and updates
  • To administer surveys
  • To send periodic emails and newsletters

The email address you provide may be used to send you information and updates pertaining to an order or donation, if available, in addition to receiving occasional organization news updates, related programs, or service information.

If at any time you would like to unsubscribe from receiving future emails, we include detailed unsubscribe instructions at the bottom of each email.

Your information, whether public or private, will not be sold, exchanged, transferred, or given to any other company for any reason whatsoever, without your consent, other than for the express purposes of delivering a purchased product or service requested, if available, and when consent is given for special projects.

Telephone and SMS/Text Messages

People who contact our phone number, 888-MYO-RARE (696-7273), automatically opt-in to receive SMS/text messages. NOTE that we only send text messages after a phone call to advise you that you can contact us via email or via text for a faster reply. MSU never sends otherwise unsolicited messages. Users may reply “STOP” to opt out of SMS/text.

By calling or texting the number above, you agree to receive text an automated text message to provide further information. MSU does not send marketing or promotions via SMS/text; only for the purpose of responding to you. If you no longer wish to receive text messages, you may opt-out at any time by replying “STOP”.

Email Privacy

MSU does not provide, sell, or rent email addresses to anyone outside the organization.

How is information secured and protected? 

All data collected by Myositis Support and Understanding on our website is stored on secure servers. We also maintain physical, electronic, and administrative safeguards to protect our data from accidental, unauthorized or unlawful access, use, modification, disclosure, loss, or destruction. We restrict access to the data solely to authorized users. No security measures are perfect and there can be no absolute assurance of security therefore, we cannot and do not offer an absolute guarantee or warrant the security of the information we possess.

Information Sharing

As described above, Myositis Support and Understanding stores data on its secure servers. We may share aggregate, non-personal information with Publishers and Networks in connection with reporting and accounting needs as well as with other unaffiliated third parties for various purposes such as statistical or educational analysis. Data shared does NOT include any personally identifying information.

We may disclose your information to third parties when we reasonably believe we are obligated to do so by law, and in order to investigate, prevent or take action regarding suspected or actual prohibited activities, including but not limited to, fraud and situations involving potential threats to the physical safety of any person.

External Links

Our website contains links to other websites. Myositis Support and Understanding is not responsible for the content, privacy policies or practices of any third party website.

Updating this statement

Myositis Support and Understanding may update this privacy policy by posting a new version on this website. You should check this page occasionally to ensure you are familiar with any changes.

Changes to our Policy

We may revise this Policy at any time. Any changes and/or updates to the Policy will be updated directly on this page. We encourage you to visit this page periodically to review our current Policy so that you will always know what information we gather and how we may use that information.

Contacting Us

Should you have any questions in regard to this Privacy Policy please contact our representatives. They will be more than happy to clarify and assist you in any way possible.

Email: contact@UnderstandingMyositis.org

Mailing Address:
Myositis Support and Understanding
9125 N. Old State Road
Lincoln, DE 19960

Privacy Policy updated October 23, 2023


Cookies Policy

Cookies

Our website uses “cookie” messages to automatically help provide you with better services. They tell us who you are and your preferences for our website based on what you’ve done and told us before. The “cookie” is placed in your computer and is read when you come back to our website.

Cookies allow us to take you to the information and features of our site you are particularly interested in. They also let us track your usage of our site, so we know the sections of our site most popular. You can reject cookies or cancel them by instructing your Web browser accordingly.

Changes to our Policy

We may revise this Policy at any time. Any changes or updates to the Policy will be updated directly on this page. We encourage you to visit this page periodically to review our current Policy so that you will always know what information we gather and how we may use that information. In the event we make any material changes to this Policy we will advise our Members and Networks of such changes in advance.

Requesting the data we have about you

You can request a copy of the data we have about you by using the contact form on our site. You will receive a confirmation email once the request has been put in.

Policy updated Oct. 23, 2023

Contacting Us

Should you have any questions regarding this Cookie Policy, please contact our representatives. They will be more than happy to clarify and assist you in any way possible.

Email: contact@UnderstandingMyositis.org

Mailing Address:
Myositis Support and Understanding
9125 N. Old State Road
Lincoln, DE 19960

See Full Terms and Conditions

© 2024 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

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