Community Rules

These rules apply to all activity on SpinalMuscularAtrophy.net or Health Union operated properties, including but not limited to the website, SpinalMuscularAtrophy.net Facebook pages, Instagram, etc. The term “activity” includes, but is not limited to posts, comments, replies, direct messages, status updates.

Please see the complete SpinalMuscularAtrophy.net for more information.

We encourage open conversation within SpinalMuscularAtrophy.net – it is our goal to create the best and largest online community of experts and patients dedicated exclusively to spinal muscular atrophy. 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 SpinalMuscularAtrophy.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 a member of SpinalMuscularAtrophy.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 SpinalMuscularAtrophy.net moderators if it does not comply with the following community rules:

1. Comments must relate to the subject of spinal muscular atrophy or living with spinal muscular atrophy. Posts completely unrelated to this topic may be deleted.
2. Conversations about religion, sex, and politics should be in the context of spinal muscular atrophy. Also, they must be worded in ways that are not offensive nor inflammatory. For example, talking about legislation that affects a person living with spinal muscular atrophy is fine; making disparaging remarks about a specific politician or political group is not.
3. Posts cannot contain any personal contact information such as an e-mail address, physical/mailing address or phone numbers. And please remember that SpinalMuscularAtrophy.net, like the entire Internet, is discoverable by search engines, etc.
4. Posts must be written in English; we can only moderate comments written in English.
5. Posts cannot offer medical advice of any kind.
6. Posts 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 spinal muscular atrophy.
7. Posts and direct messages cannot include nudity or otherwise explicit content.
8. 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.
9. 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.
10. Posts cannot be commercial in nature or contain any direct or indirect solicitations, including solicitations to participate in legal action or 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 SpinalMuscularAtrophy.net. Petitions that advocate for community members based on the condition, that do not involve commercial interest, may be allowed. Oh, and usernames can’t be commercial, either. Usernames like “MyProductIsTheBest” will be deleted.
11. 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. We suggest you use any of the many other sites/services that are specifically dedicated to those types of transactions.
12. 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.
13. Users must only post information that is true and factually correct, to the best of their knowledge.
14. Posts must be respectful; it’s OK to disagree but personal attacks against 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.
15. 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
16. Blatant profanity is not permitted, however, self-censored swear words are allowed. For example, using asterisks or other symbols instead of including the word in its entirety is permitted. Many individuals find this to be a helpful way to express themselves while being considerate to those who are sensitive to and/or offended by the use of profanity.
17. 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.
18. 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