iECURE Social Media Community Guidelines

Welcome to iECURE’s social media community. Thank you for following us and joining the conversation.

Our social media channels are intended to share information about iECURE, genetic medicine, clinical research, rare disease education, and the communities we serve.

We welcome thoughtful engagement, respectful dialogue, and informed discussion. To help maintain a professional, safe, and constructive environment for all participants, we ask that you review and follow the Community Guidelines below when visiting or interacting with our social media accounts.

By engaging with our social media channels, you acknowledge and agree to abide by these guidelines. These Community Guidelines may be updated periodically, and we encourage you to review them from time to time.

Be Respectful
We welcome thoughtful, respectful conversation. To help maintain a positive community, we reserve the right to hide or remove content that:

  • Violates the terms, rules, or standards of Facebook or Instagram
  • Is defamatory, abusive, harassing, threatening, discriminatory, or otherwise offensive
  • Contains profanity, obscene language, or inappropriate content
  • Is misleading, false, or misrepresents iECURE, our research, or others
  • Promotes illegal activities or violates applicable laws
  • Includes spam, repetitive promotional content, or unauthorized advertising
  • Infringes on intellectual property rights or violates copyrights or trademarks
  • Impersonates another individual or organization
  • Discloses confidential, proprietary, or non-public information

Repeated or serious violations of these guidelines may result in content being removed and/or users being blocked from our social media channels.

Protect Your Privacy
Social media channels are public forums. For your privacy and protection, please do not share sensitive personal or confidential information, including:

  • Home address or phone number
  • Health information or medical records
  • Insurance information
  • Any other personally identifiable information

Except as required for pharmacovigilance or other regulatory or legal obligations, iECURE does not collect, store, or use personal information shared through social media interactions.

Medical Information
The information shared on iECURE’s social media channels is intended for general educational purposes only and should not be considered medical advice, diagnosis, or treatment recommendations.

If you have questions about your health, treatment, or medical care, please consult your physician or another qualified healthcare professional.

iECURE does not provide personalized medical advice or medical consultations through its social media channels. To help protect your privacy, please do not post or request personal medical information, treatment recommendations, or questions about your individual medical situation in comments or direct messages.

References to investigational therapies, clinical research, or clinical trials are provided for educational purposes only and should not be interpreted as medical advice or recommendations for participation in a clinical trial or treatment.

Clinical Trial Questions
We welcome questions about our clinical research. However, we cannot determine study eligibility or discuss individual medical situations through social media.

For your privacy, please do not share personal information, including medical or health information, when interacting with our social media sites.

If you are interested in learning more about one of our clinical studies, please visit OTC-HOPE.com or speak with your healthcare provider.

iECURE’s investigational therapies have not been approved by regulatory authorities. Safety and efficacy have not been established.

Adverse Events and Product Complaints
Our social media channels are not intended for reporting side effects, adverse events, or product complaints. Any information submitted through social media that references a potential side effect or adverse event may be reviewed and reported to the U.S. Food and Drug Administration (FDA) or other regulatory authorities, as required by law. iECURE may contact you to obtain additional information if necessary.

If you believe you have experienced a side effect or adverse event, please contact your healthcare provider or emergency medical services immediately. To report a side effect or adverse event associated with an iECURE investigational therapy, please contact the iECURE Quality Department at QA@iECURE.com.

If you are experiencing a medical emergency, call 9-1-1 immediately or contact your local emergency services provider.

Third-Party Content
Links to third-party websites or organizations are provided for convenience and do not constitute an endorsement by iECURE.

We May Not Respond to Every Comment
While we regularly monitor our social media channels, we may not be able to respond to every message. Thank you for helping us create a respectful, supportive community.

Thank you
Our goal is to foster thoughtful conversations that increase awareness of rare diseases, support patients and families, and advance understanding of rare diseases, genetic medicine, and clinical research. Thank you for being part of our community.