Privacy Policy (last updated May 2018)
This Privacy Policy describes your choices regarding use of this website, our collection and use of personal information, and your rights regarding your personal data on our site. If you do not agree with the terms, please do not access or use the Marrowforums website or forums.
Marrowforums understands that your personal information belongs to you. Protection of your privacy requires that we be partners and each do our part. When you face a serious illness, describing your personal situation in a forum system such as Marrowforums may help you get assistance or support. But it also allows people you don't know to read information about you. You must choose how much information to share.
We respect the General Data Protection Regulation (GDPR) of the European Union and extend the same protections and rights to all users of our site.
Please read the information below because it is important that you understand it. We welcome comments and questions about privacy because we want you to understand our policies and the role you play in managing your privacy.
Information Collected During Registration
When you register for the forums, you must supply the following information:
  1. A User Name, which you may select
  2. A password, which you may select (please make it a strong one!)
  3. Your email address
  4. Your date of birth
This information is used as follows:
  1. Your User Name is shown to others who view the forum discussions. It appears next to each forum post you make and in the list of registered or active members. It is the name by which others in the forums know you. You may use your real name, real name and last initial, or a pseudonym or alias. Deciding whether or not to be known in the forums by your real name is up to you. It will not affect your forum use or privileges.
  2. Your password is used by the forum system to verify your User Name when you log into the forums. It's important to use a hard-to-guess password and to avoid using a password that you also use for other purposes, to make sure that nobody else can use your Marrowforums account. Keep your password to yourself.
  3. Your email address is used to complete the registration process, to send you email that you request (e.g., automatic notifications of forum activity), and for messages from the site administrators, if necessary, regarding issues of forum operation and administration.
  4. Your date of birth is used to verify that you are age 13 or older, which for legal reasons is the minimum age for registration. However, because Marrowforums deals with serious health issues and allows anyone who registers to post messages, we recommend a minimum age of 18 and that a parent be the registrant if the patient is a minor.

    By default, your age and date of birth are not displayed to other members. They are displayed only if you enable the display by changing from the default setting in your User Profile. For the most privacy, you should leave the default setting or clear the data from your User Profile.
Information Collected When You Post
When you post, the forum software records the text of your post, the date, the time, and the internet address (IP) from which the post was made. The text, date, and time are displayed in the forums. The internet address is not displayed.
Marrowforums retains no personal information when unregistered visitors browse the forums. Statistical information, including the numbers of site visitors, lengths of visits, counts of thread views, and other categorical information may be kept.
Use of cookies: The forum software used by Marrowforums will store cookies (small strings of text) on your computer if you have them enabled in your web browser. These cookies are used only to manage your forum usage, such as to recognize you for automatic login and to highlight the threads or posts you have previously read, for your convenience. Cookies are never used to collect information about you or your computer.
If you disable cookies in your web browser, you can still use Marrowforums but these conveniences will not be available and you will have to log in more frequently.
Other Information We Store
In addition to the above, we store the information that you choose to put in your member profile: forum signature, preference settings, home page URL, your relationship to the patient, your diseases of interest, your city, state, or country of residence, your occupation, your biography, your profile photo, your private messages with other members (as long as you keep them in the forum system), and your forum and thread subscriptions. This information is visible to you, can be changed by you, and can be erased by you. We will provide any or all of this information to you on request and we will remove any or all of this information from our site on request.
We keep records of administrative or customer service communications received from you or sent to you, your registration date, and the date of your last visit to our forums. We consider this information necessary to operate our site. We will provide any or all of this information to you on request.
We keep backup copies of our website content and our databases so that we may restore the site in the event of a hardware or software failure.
We use Google Analytics to gather statistics on forum usage, which may identify web browsers, operating systems, countries, referrer addresses, or similar information about website visitors, but in aggregate form and without any identifying personal information.
We do not use any personal information for marketing purposes.
Our Role: Respecting Your Privacy
The owners of Marrowforums will not give away, sell, rent, share, or otherwise distribute your personal information to any third party. Marrowforums will not contact you, try to sell you any product or service, send you solicitations of any kind, or require any form of payment to be a registered member or to post. Marrowforums will not broadcast messages to all of its members by either email or Private Message.
  1. Your information may be shared in cooperation with an authorized law enforcement agent dealiing with a legal matter.
  2. The site administrators may contact you in regards to the administration and use of the website, to reply to contacts (questions, requests, or comments) you initiate, or when they believe a message sent to you will be in your best interest.
  3. You can, if you want, allow other forum members to contact you privately in ways you specify. See "Communications with other members" below.
  4. If the Marrowforums services or forums are ever transferred to new owners, we will require that these same privacy protections apply to your personal data.
Your Role: Deciding How Much to Reveal
Member profiles: As a registered member, you may optionally fill out a member profile with information about yourself (example: the city you live in). Member profiles allow you and others to find common concerns or locations.
Member Signatures: As a registered member, you may optionally use a forum signature, a message that will appear under each of your posts. We suggest that signatures provide information about the disease you are dealing with and your relationship to the patient. You may choose to include limited information about the patient's condition or treatment. The intent is to give context to your posts and keep you from having to repeat the same basic information over and over when discussing your circumstances.
Forum posts: Forum posts you make are immediately visible to anyone viewing the site. Consider how much information you want to provide to others before you post.
Changing your mind: Although you can edit your posts after the fact, you cannot take back information that other people have already read, noted, and possibly replied to. Public viewing of forum posts is the nature of a forum system.
Disclaimer: Because we do not control what forum members post, or who reads your posts, we cannot control what other people do with information that you reveal in your profile, signature, or posts, nor what they post in response to your posts. We cannot guarantee the accuracy of information in forum posts and strongly advise you not to base medical decisions on unverified information. We take no responsibility for what we cannot control, including errors in the software used to run the forums and the services provided by the service that hosts Marrowforums.
Communications with Other Members
You can enter into public discussions with other members by means of forum posts.
You can control, by means of your User Options, whether or not to allow other members to contact you privately using Private Messages, by direct email, or via Instant Messaging services.
The Private Message system preserves your privacy because you are still identified only by your User Name, and only you and the other member see messages you exchange. For that reason, Private Messages are enabled by default.
In contrast, if you enable the receipt of direct email or Instant Messages, your email address or Instant Messaging name will no longer be private. For that reason, receipt of email and Instant Messages is disabled by default. To "opt in" you must enable these features.
Information you choose to reveal to other members in Private Messages is not covered by the site's Privacy Policy, since we do not monitor Private Messages between members. Messages by email or Instant Messages are sent outside the forum system and also not covered by the Privacy Policy, even if the communication is initiated using a link within the forum system.
We ask that you respect the privacy of other members just as you'd like them to respect yours.
Messages in the AA-MDS-TALK Archive forum were originally posted to the AA-MDS-TALK Listserv before Marrowforums and its Privacy Policy were established. The listserv messages were visible to anyone who joined the listserv, but not to the general public. A corresponding policy is used at Marrowforums: The AA-MDS-TALK Archive forum is visible only to registered forum members.
Contacting Us
You may contact us to inquire about your personal information, request copies of your personal information, ask us to remove your personal information, or exercise your other privacy rights. See our Contact page for the methods you can use to contact us.
If you ask to have your account canceled, we will cease using your personal information to provide you with access to and use of this site. We will retain or use your information only as necessary to comply with our legal, regulatory, ethical, or site-operation obligations.
Privacy FAQ
Who has access to your personal data? The owners and administrators of Marrowforums and our hosting service provider: A Small Orange. IP address data is collected by Google Analytics.
How is data protected? Personal data in our databases, host access, and backup data are all secured with very strong passwords. Your user password is stored in hashed form, not in plain text.