Forum Guidelines and Tips

Welcome to Our Community Forum!

We encourage our registered members to read and participate in our forums. We know that the best content and information will come from our site users, and we want all our readers to learn and benefit from these discussions. In order to submit a posting, you must first register on our Web site as a patient, caregiver, or healthcare professional. Once you have a user account, you're ready to begin.

Below you will find some rules and regulations regarding the use of our forum and our rights as moderators. We ask that all site users who post content in our forum to please abide by these guidelines. We have also listed some tips and suggestions for using our forum.

If you have a specific question about the Web site please do not post on our forums but instead contact us and we will respond to your comment or inquiry directly.

Rules and Regulations

All forum postings are subject to the terms of use ("TOU") that you agreed to when you registered for this site. Here are some tips and guidelines that build on those TOU.

  • Be Courteous
    Although we do encourage a lively debate on the site, we ask that all users please remain courteous, polite, and respectful to other users. It is acceptable to challenge another user's comments or position on an issue--but please refrain from personally attacking and insulting other users. This includes adding any sarcastic or snide comments.
  • Post as Yourself
    Although we do not require that you post using your real name (make sure your user name is not similar to your real name to maintain your anonymous identity), please do not misrepresent yourself or submit postings under an identity (individual or company) that is not your own. We also ask our users to maintain only one account on the site and that you post all content under that one account.
  • Stay on Topic
    Please only post content in our forums that is relevant and related to the forum category in which you are posting. This is a community around rare disease issues and topics, and all forum posts should be related and relevant to the rare disease community.
  • No Advertisements
    Please do not post any marketing messages in your postings. This includes any solicitations to our readers for commercial or promotional purposes of any kind.
  • No Profanity
    Please refrain from using any foul language in your postings. We also ask that you do not link to any external sites with objectionable or offensive content.
  • Keep It Clean
    In addition to foul language, we will also not tolerate any obscene, sexually explicit, racist, or hateful language of any kind. Any postings with this type of content will immediately be deleted and associated user accounts will be closed and banned from our site.
  • Stay Safe
    Although this is a community site and we encourage you to make connections with other registered members, please keep all public postings safe and private. Do not post any private or personal information such as your phone number, home address, or e-mail address. This also includes posting other people's private information.
  • Use Good Grammar
    We encourage site users to use correct spelling and grammar (as much as possible). We generally will not edit any postings, however, if we feel that the grammar and sentence construction makes your posting very difficult for other users to understand, we might edit to allow other users to better understand your posting. We also ask that you keep your postings as clean, simple, and readable as possible--please avoid using all capital letters, excessive use of bold, underlined, and italic text, and overuse of any punctuation marks and symbols.
  • Avoid Plagiarism
    Please do not include any content that you did not write or create yourself (except briefly for editorial purposes) in any of your postings.

Adding a Post

Once you've created an account on our Web site as a patient, caregiver, or healthcare professional, you can then click on the "post a topic" button located on the top of the Forum page to add your content. On this page you will be asked to enter a forum title and description, select a category, and add tags. Before submitting your first post, please review our "Tips and Suggestions" section below for some useful tips on what to include with your postings to help increase the visibility of your topics on the site. If you have any specific questions or problems submitting a topic, please visit our contact form and we will be happy to assist you with any problems.

Tips and Suggestions

  • Review Prior Postings
    Before adding a new post please take a quick scan of our forums to make sure that your topic or question does not already exist. We encourage new postings, however, we want to prevent new threads from being started if another similar thread already exists on the same topic. You can view our forums by clicking through the main categories or by using the search box located in the top header on any forum page. If a similar discussion thread does already exist, please add your comments to the topic. New comments are highlighted in many areas on our site and will likely draw new users to the thread.
  • Write Descriptive Titles
    Write brief but complete and descriptive topic titles. We want other site users to be able to find your content--the clearer your title, the more likely other site users will read your posts and respond to your submission.
  • Tag Your Content
    Adding tags to your postings is the best way to ensure that your content is easily found by other readers.
  • Report Inappropriate Content
    Any site user who feels that a posting is objectionable in anyway (obscene content, profanity, vulgarity, racist language, hateful content, spam, self-promotional material, advertisements, etc) is strongly encouraged to let us know by clicking the report abuse links. These links are located on the bottom of all forum postings and on all comments within each thread. Any reports will be sent immediately to our moderators and will be handled in the most appropriate way as soon as possible. Please do not reply to any postings that you feel are objectionable.
  • Vote on Comments
    If you read a posting or comment that you think was particularly helpful or added new insights into the discussion, vote it a thumbs up! The more votes a comment receives, the more likely it will be found by other site users since comments with high tallies will be featured throughout the site. If you found a comment to be very interesting, insightful, or helpful, chances are another site user will feel the same. Voting on quality comments is also a great way to encourage more helpful comments from all site users. You can vote any comment as helpful or not helpful by clicking the "thumbs up" or "thumbs down" image located at the bottom of all posted comments.

Our Rights as Moderators

We reserve the right to delete any forum postings for any reason, including those that violate our stated forum guidelines. We may also edit certain sections of forum postings if we feel necessary. If our moderators feel that a forum posting was placed under an incorrect category, they might move the topic (and related thread) to a more appropriate category.

Violation of these guidelines will result in a warning being issued to the poster of the content. Repeated warnings from our forum moderators will result in either a temporary or possibly a permanent ban from our Web site. The specific action taken from our moderators will vary depending on the severity of the violation.

For more information, please see our Terms of Use.