This website is owned and operated by or on behalf of both Myositis Support and Understanding Association and The Myositis Association (referred hitherto “us”) and specifically geared toward the Adult Dermatomyositis Externally-Led Patient-Focused Drug Development (EL-PFDD) Session to take place on June 7th 2024. We recognize that visitors to our site may be concerned about the information they provide to us, and how we treat that information. This Privacy Policy addresses those concerns. This policy may be changed or updated from time to time.
If you have questions about our Privacy Policy, you can contact us either of our organizations at MSU or TMA.
We are available to answer your questions or hear your concerns.
Our Official Privacy Policy
We value our relationship with patients, families and supporters. We are careful to protect that relationship by respecting your privacy and the information you share with us.
Our privacy policy is explained below.
About Our Information-Gathering Practices
We will never give, sell or rent our mailing lists to any third-party.
Regardless of whether you register at our website, your name will not be shared with others outside of the Partnership between MSU and TMA for the Adult dermatomyositis EL-PFDD. Exceptions to this policy include your approval or request to share your information, legal processes, or when we believe that disclosure is necessary to protect you or our rights as required by law.
When you leave Comments on the site
When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.
An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: https://automattic.com/privacy/. After approval of your comment, your profile picture is visible to the public in the context of your comment.
Media Uploads
If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.
Our website may use cookies to enhance your site experience.
Cookies are pieces of information that some websites transfer to the computer that is browsing that website and are used for record-keeping purposes at many websites.
If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year.
If you visit our login page, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.
When you log in, we will also set up several cookies to save your login information and your screen display choices. Login cookies last for two days, and screen options cookies last for a year. If you select “Remember Me”, your login will persist for two weeks. If you log out of your account, the login cookies will be removed.
If you edit or publish an article, an additional cookie will be saved in your browser. This cookie includes no personal data and simply indicates the post ID of the article you just edited. It expires after 1 day.
How and for how long we retain your data
We respect your privacy and are committed to protecting your personal data. Any information you provide while registering for the EL-PFDD event will be used exclusively for event-related communication and engagement purposes. We will not retain your personal data past six months after the EL-PFDD.
What rights you have over your data
If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have.
About the links and resources at our site.
Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.
These 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 the embedded content if you have an account and are logged in to that website.
Regarding the Use of Our Site by Children Under 13
Our site is intended for adults.
Because you can visit our site without disclosing any personal information, we do not know when a child is viewing our site. Like any web site, we offer email ability into our organizations and links to other sites. We encourage parents to speak with their children about the personal information they share online and privacy issues involving use of the Internet.