These rules apply to all activity on RareDisease.net or Health Union operated properties, including but not limited to the website, RareDisease.net Facebook pages, Instagram, etc. The term “activity” includes, but is not limited to posts, comments, replies, direct messages, status updates.
We encourage open conversation within RareDisease.net – it is our goal to create the best and largest online community of experts and patients dedicated exclusively to rare diseases. But please be courteous, and stay on topic. We realize that discussions around healthcare can be sensitive and sometimes emotional, and disagreement is okay. However, all activity must be respectful, non-inflammatory, and non-threatening.
The content of RareDisease.net is intended for users 18 years of age or older. If you are under the age of 18, you are not permitted to register as aPreview Changes (opens in a new tab) member of RareDisease.net.
Your activity (which includes, but is not limited to posts, comments, replies, direct messages, status updates) may be edited or deleted at the sole discretion of RareDisease.net moderators if it does not comply with the following community rules:
- Activity must relate to the subject of a rare disease or living with a rare disease. Posts completely unrelated to this topic may be deleted.
- Conversations about religion, sex, and politics should be in the context of a rare disease and must not be offensive or inflammatory. For example, talking about legislation that affects a person living with a rare disease is fine; making remarks about a specific politician or political group is not.
- Activity that promotes, encourages, coordinates, or provides instructions for harmful activities, such as suicide, self-injury, or eating disorders, is not permitted and will be removed.
- Activity cannot contain any personal contact information such as an e-mail address, physical/mailing address or phone number. Please remember that RareDisease.net, like the entire Internet, is discoverable by search engines, etc.
- Activity must be written in English; we can only moderate comments written in English.
- Activity cannot offer medical advice of any kind.
- Activity cannot encourage any illegal activity. Posts that discuss illegal activity but do not encourage it may be allowed if they pertain to the conversation at hand as well as to a rare disease.
- Activity cannot include solicitations of any kind, any nudity or otherwise explicit content.
- Messaging many users at once, sending repeated messages, and/or sending any form of unwelcome messaging is not permitted. Continued violation of this rule may result in your account being closed and banned from the site.
- Content copied from another person or site must be fully referenced and credited to the original author. If you’re not sure, don’t use it.
- Activity cannot be commercial in nature or contain any direct or indirect solicitations. Posts cannot promote the sale of anything, ever. We do not allow users to offer to sell, barter or trade any items of any kind. This includes solicitations to participate in legal actions, fundraisers, offers to sell a product or service or participate in surveys, studies, invitations to join closed/private groups, etc., without the prior approval of RareDisease.net. Oh, and user names can’t be commercial, either. User names like “MyProductIsTheBest” will be deleted.
- Petitions to advocate for community members based on the condition, that does not involve commercial interest, may be allowed.
- All user-generated and/or submitted activity may be viewable to the public and visible to search engines. While users may be able to delete some posts and user activity, stories cannot be deleted.
- Users must only post information that is true and factually correct, to the best of their knowledge.
- All activity must be respectful and non-inflammatory. Personal attacks and/or bullying moderators, bloggers, writers or fellow community members will not be tolerated. Please be careful about making derogatory statements or accusations about others by name, including other community members, employers, physicians, etc. While you should feel free to speak your mind, remember that you are accountable for any written statements you make. Any post that can be considered libel may be deleted.
- Activities involving multiple comments, direct messages, posts, etc., of the same content (i.e., posting the same article multiple times or completing the same activity multiple times) can be interpreted as spam and may be deleted.
- Profanity should be used sparingly and in the context of living with a rare disease as some in the community may find coarse language offensive. Moderators retain the right and discretion to edit and delete such content.
- Community members in clinical trials are asked to respect and adhere to the guidelines of their trial protocol, with regards to communicating information about the trial. Some clinical trials have rules that ask participants not to share information, such as reactions to medications, until the trial has been completed. While we encourage discussion about participation in clinical trials and recognize it is important for people to share their experiences, certain blinded studies require participants not to disclose symptoms or details to anyone other than their health care professionals, as not to bias the study or other study participants.
- Completing activities for the purposes of cheating or gaming rewards, giveaways, and/or surveys will not be tolerated.
Individuals who violate these rules may have their posting privileges revoked without warning.
Last updated January 13, 2023