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r/ehlersdanlos PUBLIC
This is a support sub for those with Ehlers-Danlos syndrome (all types) and HSD—diagnosed or waiting to be diagnosed. This is a welcoming place for those affected (or those simply wanting to learn more) to ask questions, share successes and failures, feel less alone, and discuss everyday life. Before participating, please read our rules. This subreddit does not allow medical advice. Thank you!
Marketing Summary
r/ehlersdanlos is a PUBLIC community on Reddit with over 117,596 members. It currently has a positive sentiment with an engagement rate of 0.9%. With a community friendliness score of 80, this subreddit presents a moderate conversion potential for authentic brand participation. Self-promotion is generally allowed according to recent analysis.
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Rules & Compliance
Posting Requirements & Restrictions
Subreddit Rules
- No Medical Advice: Asking “Do I have EDS?” (and similar posts) are not allowed.
- Users can share lived experiences & general suggestions.
- Direct medical advice—including diagnosing, prescribing medication or treatments—is prohibited. Recommendations & suggestions are allowed with mod discretion.
- Posts seeking individualized medical advice will be removed (e.g. VUS, symptom lists, etc.). Pictures of symptoms, and sensitive or urgent matters will be removed.
- Use the “No Advice, Please” flair to avoid advice.
- No Medical Misinformation, AI Content, or Unsupported Big Claims: Significant medical or scientific statements require reputable sources.
- Misinformation includes—but is not limited to—hoaxes, conspiracy theories (e.g., about vaccines, etc.), pseudoscience, and snake oil treatments. - Do not post or recommend AI-generated text or images (e.g., ChatGPT), as AI content often contains misinformation. All contributions must be human-made. - Scientific literature should be peer reviewed. All non-peer reviewed sources require mod approval prior to posting.
- No Pregnancy-Related Morality-Based Judgements or Unwanted Comments: The decision to have children is deeply personal, regardless of Ehlers-Danlos syndrome or any other medical condition. Discussions about pregnancy and related topics (including abortion) are allowed. However, debating the morality of having children with EDS or other conditions, or making moral judgments about people who have children with disabilities, is not permitted. Unwanted or unsolicited commentary on pregnancy or reproductive choices is also prohibited.
- No Memes or Off-Topic Posts (exception on Saturday): Memes and off-topic posts can only be posted on Saturdays. Posts on other days will be removed. Please use the assigned flair.
- No Gatekeeping: Gatekeeping, in reference to this sub, is defined as actively or passively dismissing and/or vocally doubting someone’s diagnosis, experiences or symptoms. This applies for speaking about one person or as a general comment talking about a group of people.
- This also includes comparing the severity of symptoms or their impact on people's lives, as well as making assumptions on anybody else's conditions or disability.
- No Party Tricks or Resetting Joints: Party tricks and joint resetting are not allowed. “Party tricks” are deliberately bending body parts in ways that people without hypermobility can’t. They can be harmful for those with HSD/EDS, which is why any form of party tricks (including pictures, stories, etc.) are not allowed on this sub. This also includes demonstrating, describing, or encouraging joint resetting/manipulation (e.g., popping joints back into place).
- No Polls, Surveys, Research, or Petitions: We do not, generally, allow submissions on polls, surveys, research projects, and/or petitions. If you want to post anything related, please contact the moderators first with a clear description of what you want to post and the purpose of it. We will get back to you regarding whether you can post it in the sub. We will only consider topics that directly relate to EDS. Other topics can be posted in r/disability_survey or r/SampleSize.
- Be Kind to Each Other (including Brigading) : This sub is a supportive space—please be kind and considerate. The following are prohibited and may result in removal or a ban: name-calling, insults, personal attacks, trolling, harassment, ableism, sexism, racism, bigotry, islamophobia, anti-semitism, anti-LGBTQ+ sentiments, abuse of mods, belittling others, doxxing, threats, negatively comparing two illnesses, or violations of Reddit’s policies (including brigading). We prioritize member safety, and violations will be handled accordingly.
- No Social Media, Fundraiser Links, or Self-Promotion: Self-promotion, fundraising, and reselling are not allowed. All outside social media links (Instagram, TikTok, Discord, blogs, etc.) with the exception of YouTube are not allowed. You may link to any SFW subreddit as long as it is on topic.
- Summarize and Describe Your Links: All links (including videos) must: - Summarize the link - Explain why it is relevant to the EDS community, and - Start or contribute to the discussion
- Posts without sufficient context will be removed. If a link references a scientific study or medical finding, the original peer-reviewed research should be linked whenever possible, rather than only news outlets, blogs, or secondary summaries. Posts relying only on secondary sources or misrepresenting results may be removed.
- Flairs and Trigger Warnings: Please use and respect tags and flairs. This sub is family friendly. Potentially triggering or NSFW content should be either spoilered and/or tagged NSFW, as appropriate. This includes potentially triggering topics like disordered eating, weight, sex, abuse, and medical trauma.
- If you're not sure if something is triggering, please spoiler and flair your post to be safe.
- We have a “No Advice, Please” flair. If you see this on a post, do not offer any advice.
- Repetitive Topics: In an effort to reduce the amount of repetitive posts and frequently asked questions on the sub, we encourage you to use the search function at the top of our subreddit to read posts on this topic.
- Moderator Discretion: Due to the fact that rules cannot cover every possible situation, the moderators of this sub retain the right to remove a post or comment, even if it technically complies with the rules. Common reasons for removal include: photos of minors, inappropriate solicitations, false professional claims, misinformation, off-topic content, repetitive topics, meetup requests, and violations of Reddit’s content policy.
What is r/ehlersdanlos?
r/ehlersdanlos is a public Reddit community created in August 2011 with over 117,596 members. This is a support sub for those with Ehlers-Danlos syndrome (all types) and HSD—diagnosed or waiting to be diagnosed. This is a welcoming place for those affected (or those simply wanting to learn more) to ask questions, share successes and failures, feel less alone, and discuss everyday life. Before participating, please read our rules. This subreddit does not allow medical advice. Thank you!
The community has a positive sentiment and an engagement rate of 0.9%. With a friendliness score of 80, it is considered very welcoming to new members.
Self-promotion is generally allowed, making it a potential opportunity for authentic brand participation.
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