Terms and Conditions

 Terms and Conditions

Welcome to MarrowCommunity.org. Thank you for your interest in being part of our online community. We hope to provide a useful and engaging space for patients, families, caregivers and health professionals in the rare blood cancers and bone marrow failure disease community. Access to the forum is limited to the best of our ability. However, nothing on the Internet is truly private. Please use discretion when engaging in discussions about health and health-related issues. Please report any concerning behavior to CommunityHelp@aamds.org.

To ensure the best possible experience for all members, we have established some basic guidelines for participation. By joining and using this community, you agree that you have read and will follow these rules and guidelines. Please take a moment to acquaint yourself with these important guidelines.

NOTE: Before you can post at this site, YOU MUST READ AND AGREE to the these terms and conditions by selecting the "I Agree" button at the bottom of this page.

Community Audience

Who is welcome?
  • Patients living with a bone marrow failure disease (AA, MDS, PNH, CMML, PRCA, AML, etc.)
  • Caregivers and family of patients
  • Healthcare professionals supporting patients living with a bone marrow failure disease
Who is NOT welcome?
  • Pharmaceutical company representatives
  • Anyone looking to sell products and services
  • Those not living with or supporting someone with a bone marrow failure disease
Participation by those under age 18

Users of MarrowCommunity are generally 18 years of age or older. However, we do have some spaces that are designed specifically for young adults to participate in discussions about health and health-related issues. We expect that all members under 18 will do so with the permission of their parent(s) or legal guardian(s). Please remind all persons under 18 to use discretion and caution when using MarrowCommunity and report any problems to CommunityHelp@aamds.org.

Disclaimer:

Content on the MarrowCommunity website is not a substitute for professional medical advice, and should not be used to make a diagnosis or to replace or overrule a qualified health care provider’s judgment. Users should not rely upon this website if they believe they need emergency medical treatment. If you believe you have a medical emergency please call 911. We strongly encourage users to consult with a qualified health care professional for answers to any medical or treatment-related questions.

Community Rules

  1. Respect others. Focus on the content of posts and not on the people making them. Rude or insulting messages are prohibited.
  2. Respect the purpose of the community. Use the community to share successes, challenges, constructive feedback, questions, and goals instead of products or services that you provide. If you’ve found a product or service helpful, please share your experience with the group in a respectful way.
  3. All defamatory, abusive, profane, threatening, offensive, or illegal materials are strictly prohibited. Do not post anything that you would not want the world to see or that you would not want anyone to know came from you.
  4. Respect intellectual property. Post content that you have personally created or have permission to use and have properly attributed to the content creator. Do not distribute content from others without permission.
  5. Post your message or documents only to the most appropriate communities, rather than post the same message or document many times.
  6. Do not make any postings that promote the sale of all any products or services.
  7. Use a secure password to prevent unauthorized access to your account.

Discussion Group Etiquette

  1. State concisely and clearly the topic of your comments in the subject line. This allows members to respond more appropriately to your posting and makes it easier for members to search the archives by subject.
  2. Extend the benefit of the doubt to other users who may be newly diagnosed or don't know as much as you. Forum discussions need to be kind and courteous.
  3. Do not send administrative messages, such as “remove me from the list,” to the group. Instead, use the web interface to change your settings or to remove yourself from a list. If you are changing email addresses, you do not need to remove yourself from the list and rejoin under your new email address. Simply change your settings.

Privacy Guidelines

Medical Information

This site fosters discussions of medical issues. By using this site, you acknowledge your understanding that medical decisions should be made in consultation with qualified medical professionals, and that this site may contain non-authoritative and unverified information, suggestions, or advice. You also acknowledge that it is your responsibility to decide what medical information to share.

The Legal Stuff

This site is provided by the Aplastic Anemia and MDS International Foundation (AAMDSIF). AAMDSIF is not responsible for the opinions and information posted on this site by others. We disclaim all warranties with regard to information posted on this site, whether posted by AAMDSIF or any third party; this disclaimer includes all implied warranties of merchantability and fitness. In no event shall AAMDSIF be liable for any special, indirect, or consequential damages or any damages whatsoever resulting from loss of use, data, or profits, arising out of or in connection with the use or performance of any information posted on this site.

Do not post any defamatory, abusive, profane, threatening, offensive, or illegal materials.  Do not post any information or other material protected by copyright without the permission of the copyright owner. By posting material, the posting party warrants and represents that he or she owns the copyright with respect to such material or has received permission from the copyright owner. In addition, the posting party grants the AAMDSIF and users of this site the nonexclusive right and license to display, copy, publish, distribute, transmit, print, and use such information or other material, and to remove, edit, or relocate messages or files for any reason. The AAMDSIF retains these rights even if you choose to close your account and/or leave the site.

While AAMDSIF will actively monitor the site for inappropriate postings, and may undertake editorial control of postings, we are unable to review and monitor all postings. In the event that any inappropriate posting is brought to the attention of AAMDSIF we will take all appropriate action.

AAMDSIF reserves the right to terminate access to any user who does not abide by these guidelines.

Privacy Policy

Any personal information you provide to us, including and similar to your name, address, telephone number and e-mail address, will NOT be released, sold, or rented to any entities or individuals outside of our organization except as noted below.

MarrowCommunity accounts

Posts that you make in our discussion threads, and files that you upload to our libraries, will be visible to the public, with one exception: posts in the private PNH Support Group community will be seen only by members of that community. You are responsible for the privacy of the information that you choose to include in your personal profile, which you can control using the My Account > Privacy Settings page.

Our Service Providers

We may share your personal information with people or companies that perform services on our behalf, for example, to operate this site. Our service providers are required by contract to protect the confidentiality of the personal information we share with them and to use it only to provide specific services on our behalf.

Business Transfers

Your personal information is subject to this Privacy Policy, regardless of transfer to another entity (either an affiliated entity or an unrelated third party) in connection with a merger, reorganization, dissolution or similar corporate event. In other words, the acquiring entity must abide by this Privacy Policy regarding the use of your information.

Government and Legal Disclosures

We may disclose the personal information we collect through this Site, when we, in good faith, believe disclosure is appropriate to comply with the law (or a court order or subpoena); to prevent or investigate a possible crime, such as fraud or identity theft; to enforce our Terms and Conditions or other agreements that govern your use of this Site; or to protect the rights, property or safety of our company, our users, or others.

External Sites

We are not responsible for the content of external Internet sites. You are advised to read the privacy policy of external sites before disclosing any personal information.

Cookies

A "cookie" is a small data text file that is placed in your browser and allows us to recognize you each time you visit this site (personalization, etc). Cookies themselves do not contain any personal information, and we do not use cookies to collect personal information. Cookies may also be used by 3rd party content providers such as news-feeds.

Site Usage

We may automatically collect certain usage information when you access our site, such as Internet Protocol (IP) addresses, log files, referrer addresses, pages viewed, web browser type, and other usage information. For example, we collect IP addresses to track and aggregate non-personal information, such as using IP addresses to determine the regions from which users navigate to our site. We also collect IP addresses for security reasons.

Remember The Risks Whenever You Use The Internet

While we do our best to protect your personal information, we cannot guarantee the security of any information that you transmit to us and you are solely responsible for maintaining the secrecy of any passwords or other account information. In addition other Internet sites or services that may be accessible through our site have separate data and privacy practices independent of us, and therefore we disclaim any responsibility or liability for their policies or actions. Please contact those vendors and others directly if you have any questions about their privacy policies.  For any other information please contact us.