We are thrilled to have you in the Myhre Syndrome Online Community! To ensure a safe, positive, and helpful space for everyone, we ask that you follow these guidelines when participating. These policies apply to all members of the community. 

Medical Disclaimer 
No material on this site is intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition or treatment. 

Our Mission 
This community exists to connect patients, caregivers, and families affected by Myhre syndrome. The experiences and discussions shared here may help inform our collective understanding of the syndrome, contributing to greater awareness and knowledge. We encourage open, honest sharing — your voice matters. 

Prohibited Content 
Please note the following types of content are not permitted in our community: 

  • Irrelevant Content: All discussions and posts must be related to Myhre syndrome. Stay on-topic and ensure your contributions add value to the conversation.

  • Spam: Avoid posting repetitive, irrelevant, or promotional content. This includes links to commercial sites or any type of unsolicited advertising.

  • Explicit Material: Nudity, sexually explicit content, or any material that leads to inappropriate sites are prohibited.

  • Harassment & Threats: Be respectful. Harassing, bullying, or threatening behavior will not be tolerated. This includes stalking, use of profanity, and any form of intimidation.

  • Hate Speech: No content that promotes hate toward any individual or group based on race, religion, gender, sexual orientation, nationality, or any other protected category is allowed.

  • Impersonation: Do not impersonate others, including medical professionals, or engage in misleading behavior. Be honest and transparent in your interactions.

  • Private Information: Do not share private or confidential information, such as personal addresses, phone numbers, financial information, or anything not publicly accessible. Be especially mindful of sharing sensitive medical information about others without their consent.

  • Unverified Medical Claims: Do not present anecdotal experiences as medical fact or promote unproven treatments as cures. Sharing personal experiences is encouraged, but please frame them as such.

  • Copyright Infringement: Respect the intellectual property rights of others. Do not share content that violates copyright laws.

  • Malicious Content: Avoid sharing links or content that contain malware, viruses, or anything designed to harm the community, including phishing attempts or social engineering.

  • Illegal Activities: Do not promote or engage in illegal activities, including the sale of illegal substances or products, or any actions that violate local laws or regulations.


User Profiles
Your profile, including your display name and photo, should be appropriate and respectful. Please refrain from using offensive language, slurs, or any inappropriate references in your profile.

Supporting One Another
Many members of this community are navigating difficult diagnoses and challenging circumstances. Please be compassionate, patient, and mindful of the emotional weight others may be carrying. If someone appears to be in distress, encourage them to seek support from a qualified professional.

For Clinicians & Researchers
We welcome clinicians, researchers, and scientists to this community and value the expertise and insight you bring. By joining and participating in the Myhre Syndrome Online Community, you agree to the following: 

  • Confidentiality of Member Discussions: All content shared within this private forum is confidential. You agree not to reproduce, distribute, publish, or otherwise disclose any member discussions, personal accounts, or community content outside of this forum without the explicit written consent of the individual(s) involved.

  • No Unauthorized Use of Member Data: Information shared by members — including personal experiences, symptoms, treatments, and outcomes — may not be used for research, publication, presentations, or any professional purpose without prior informed consent from the relevant member(s) and, where applicable, appropriate ethical approvals.

  • Respect for Member Privacy: Members may share sensitive medical and personal information in good faith. You are expected to treat all such information with the highest degree of professional discretion, in keeping with applicable privacy laws and professional codes of conduct.

  • Identification: We ask that clinicians and researchers identify themselves as such in their profile or upon joining. Participating under the guise of a patient or caregiver is a violation of these guidelines.

  • No Recruitment Without Approval: If you wish to recruit community members for studies, trials, or research initiatives, you must seek prior approval from the community administrators before making any such approach.

By joining this community as a clinician or researcher, you acknowledge that this forum is a private, confidential space and that any breach of these terms may result in immediate removal from the community.
 
Privacy & Data Security
The Myhre Syndrome Online Community is hosted on Bublup, a platform that has achieved HIPAA and SOC 2 Type II compliance, reflecting a commitment to best-in-class infrastructure, access controls, and data security. By participating in this community, you can be assured that the platform on which your information is stored meets rigorous privacy and security standards. For full details on how your data is protected, please refer to Bublup's HIPAA compliance information.
 
As a member, you also share responsibility for protecting the privacy of others: 

  • Treat all content as confidential: Information shared within this private forum — including personal stories, medical experiences, and discussions — is shared in confidence and must not be reproduced, distributed, or disclosed outside of this community without the explicit consent of the individual(s) involved.

  • Do not share protected health information (PHI) of others: While you may share your own health experiences, never share identifiable health information about another person without their explicit consent.

  • Clinicians and researchers are additionally bound by the confidentiality terms outlined in the section above.


Reporting Abuse
If you come across any content or behavior that violates these guidelines, please report it to cthomas@myhresyndrome.org. We take violations seriously and will take appropriate action, including removing the content, limiting access, or suspending the user's participation.

We reserve the right to modify these guidelines at any time to ensure the safety and integrity of our community. By participating in the Myhre Syndrome Online Community, you agree to comply with these policies.