Community Guidelines - Family Connect Network

Community Guidelines

Our guidelines help create a safe, supportive, and welcoming environment for all families affected by Robinow Syndrome.

Our Core Principles

Respect & Support

We treat every member with kindness, empathy, and understanding, regardless of their background or journey.

Safety & Privacy

We protect our community's privacy and maintain a safe space for sharing personal experiences.

Helpful & Accurate

We share helpful information while being clear about the difference between experience and medical advice.

What We Encourage

Sharing Personal Experiences

Share your journey, challenges, successes, and insights about living with Robinow Syndrome.

Asking Questions

No question is too simple. Ask about anything related to Robinow Syndrome, daily life, or community resources.

Offering Support and Encouragement

Provide emotional support, celebrate milestones, and offer encouragement to fellow community members.

Sharing Resources

Share helpful articles, research findings, educational materials, or community resources that others might benefit from.

Connecting with Others

Build friendships, find local connections, and create lasting relationships within our community.

Discussing Research and Medical Advances

Share news about research developments, clinical trials, and medical advances related to Robinow Syndrome.

What We Don't Allow

Providing Specific Medical Advice

While sharing experiences is encouraged, please don't provide specific medical recommendations or diagnoses. Always encourage consulting with healthcare professionals.

Harassment or Discrimination

Any form of harassment, discrimination, bullying, or hate speech based on race, gender, religion, sexual orientation, or any other characteristic is strictly prohibited.

Sharing Personal Contact Information

Don't share phone numbers, addresses, or other personal contact information in public posts. Use private messages instead.

Commercial Promotion or Spam

This community is not for selling products or services. Commercial promotion, advertising, or spam is not allowed.

Off-Topic Discussions

Keep discussions relevant to Robinow Syndrome, related medical conditions, or topics that directly affect our community.

Copyright Infringement

Don't post copyrighted material without permission. When sharing articles or research, provide links and brief summaries instead of copying entire texts.

Important Medical Disclaimer

This community provides peer support and shared experiences, not medical advice. Information shared here should never replace professional medical consultation, diagnosis, or treatment.

Always consult with qualified healthcare professionals for:

  • Medical questions or concerns
  • Treatment decisions
  • Medication changes
  • Emergency situations

If you're experiencing a medical emergency, contact your local emergency services immediately.

Privacy & Safety Guidelines

Protect Your Privacy

  • • Use only your first name and last initial in posts if you prefer
  • • Don't share specific location details beyond general city/state
  • • Avoid posting photos that might identify your location or family
  • • Use private messages for sensitive personal information

Respect Others' Privacy

  • • Don't share screenshots of private conversations
  • • Ask permission before mentioning specific details about other members
  • • Respect when someone asks for privacy or declines to share information

Child Safety

  • • Never share photos of children without explicit parental consent
  • • Don't share specific details about children's medical information
  • • Be extra cautious when discussing topics involving minors

Reporting & Enforcement

How to Report Issues

If you encounter content or behavior that violates our guidelines:

  • Contact a moderator directly
  • Email support@robinow.org
  • Use the report function (when available)

All reports are reviewed promptly and confidentially.

Consequences for Violations

Depending on the severity and frequency of violations:

  • First offense: Warning and education
  • Repeated violations: Temporary suspension
  • Serious violations: Permanent ban
  • Illegal activity: Report to authorities

We aim to be fair while protecting our community.

Questions About These Guidelines?

If you have questions about our community guidelines or need clarification on any policy, please don't hesitate to reach out to our support team.

Contact Support

Last updated: January 2025

These guidelines may be updated periodically to serve our community better.