PFIC Connect is a shared community resource to help those affected by PFIC. It is a place to find support, ask questions, share knowledge and connect with those in the PFIC community. Rare disease can be a lonely and isolating experience, so we encourage you to join and participate in this group of strength and support.
By becoming a member of PFIC Connect, you are subject to the following terms and conditions and agree to abide by the following guidelines. These may be updated without notice to you.
The guidelines below were developed with the intention of promoting a welcoming and informative place for constructive discussion and meaningful connection.
General Forum Guidelines:
- Keep it clean
- Keep the language, links, and images safe for family and friends.
- Don’t post anything that a reasonable person would consider offensive, abusive, or hate speech.
- Don’t post anything obscene or sexually explicit.
- Respect other users. Don’t harass, impersonate, or bully others.
- Do not post private information without permission.
- Don’t post spam or otherwise vandalize the forum
- Be nice!
- Be agreeable, even when you disagree
- Criticize ideas, not people.
- Remember that online communication lacks the context and tone that in- person conversation can have and can lead to disagreements getting heated quickly. Try to give people the benefit of the doubt when choosing how to respond
- Help the forum stay organized
- Search to see if the topic already exists before creating a new topic
- Don’t start a topic in the wrong category.
- Don’t cross-post the same thing in multiple topics.
- Don’t divert a topic by changing it midstream.
- Don’t sign your posts — every post has your profile information attached to it
- Avoid typing in ALL CAPS, as it is considered shouting.
- Don’t encourage bad behavior
- When you see bad behavior, don’t reply. Engaging with bad behavior takes your energy and wastes everyone’s time.
- Report spam or offensive content to email@example.com
How to Use This Forum:
Public vs. Private
PFIC Connect includes both public and private forum access. In the public portion of the forums, anyone can read posts and the posts are indexed to be searchable by search engines like Google. To post in the public forum, you must be a registered user.
The private portion is only viewable by registered users. Medical information and stories of the rare disease experience can be incredibly personal and not everyone is comfortable sharing those details in a public way. We’ve made some aspects of the forum private so the PFIC community has a safe space to discuss and share. There are no hard and fast rules about what topics must be private or public. You can decide what you feel comfortable sharing. However, keep in mind that sharing your story and having those not yet connected to the PFIC community be able to see it can help raise awareness and help others.
Medical Advice Disclaimer
- Sharing your own experience is great! However keep in mind that experiences and information shared by PFIC Connect users are not substitutes for professional medical advice, diagnosis or treatment.
- All information shared by users of PFIC Connect, including but not limited to, messages, images, advice, URLs, and other materials, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on PFIC Connect.
- 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 require participants not to share information, such as reactions to medications, until the trial has been completed. While discussion about participation in clinical trials is important and we encourage people to share their experiences, certain blinded studies require participants not to disclose symptoms or details to anyone other than their health care professionals, so as not to bias the study or other study participants.