PCD FOUNDATION FORUM GUIDELINES
FORUM WELCOME
Welcome to the PCDF Forum! We are happy to include you in our community of people affected by or interested
in PCD. This forum is a resource for patient-to-patient (or parent-to-parent or caregiver-to-caregiver) education,
information and support. This forum is not intended to take the place of other PCD support forums, but to provide
a more structured and on-topic venue for people looking for information in addition to support. This forum will focus
on providing information on PCD that is as up-to-date and accurate as possible. We recognize that information about PCD
evolves rapidly, so anything posted to this forum is subject to change and should be viewed as the “best currently available
information” and not as the absolute last word.
This is a ‘casually’ moderated forum. We have full faith in the PCD community’s ability to moderate itself so posts
will be reviewed and problems addressed in a timely, but not immediate manner by our moderators.
A Note about Forum Moderators:
- Moderators are PCDF volunteers. They give freely of their time to make this a productive forum.
- Moderators apply guidelines provided by the PCDF. Moderator decisions reflect the priorities and instructions set by the PCDF and not their own personal opinions. If you disagree with a moderator decision, contact the PCDF with your concern.
- Moderators are not medical professionals. Do not ask them for medical advice.
Important Note About Registration:
Registration for the PCDF forum is required. After you register for the forum you will receive two
email notices from noresponse@websitetoolbox.com before you can use the forum. The first notice will
include a link which you need to "click" to confirm your email address. Using this link
verifies that you received the email and marks your registration "email confirmed". Note that
when you click the link you will be taken to the login screen for the forum however you will not be able to login yet.
A second notice will go out after a moderator reviews and approves your registration. The review is to verify
that the email was confirmed and that you have agreed to abide by the Terms&Conditions and Forum Guidelines.
You may now access the forum by clicking the link in the email or going to our website, www.pcdfoundation.org,
and clicking the forum link there.
HOW THE FORUM WORKS
Topics on the PCDF Forum have been grouped into four main categories: PCD Diagnosis, PCD Clinical Management, PCD
Life Management and PCD Misc. & Resources. Within each category, several individual forums have been set up. In
many of these forums, an initial informational thread has been posted. These informational posts are “pinned” to
the top of the forum so they will always be available for reference and “locked” so no replies can be made to them.
Locked and pinned posts are reference posts only. They are not meant to exhaustively explore the stated
topic, but rather to provide ‘food for thought’ and encourage the addition of new related topics to the forum.
To start a new topic or thread, click the ‘new topic’ link at the top of the page.
To reply to an existing thread, click on ‘reply.’ For questions regarding forum navigation or problems,
please send an email to the system administrator
or use the "Contact Us" link at the bottom of the screen to contact the Webmaster.
Forum Guidelines
Please read the following guidelines carefully. Posting to the PCDF forum constitutes an agreement to abide by these guidelines.
- Stay on topic and remember to post in the correct forum or thread. The focus of the PCDF forum is education and information.
To this end, we have established categories and forums dedicated to specific issues encountered in PCD. Posters are welcome to
start new threads. However, for this forum to be effective, it is important that posts stay on topic. Off-topic posts will be
moved, edited or deleted by moderators.
- Medical advice can only be given by medical professionals. For the purposes of this forum, a medical professional is a
credentialed individual invited to participate in the capacity of expert. For liability reasons, all other posters, regardless
of personal background, credentials or experience, should refrain from dispensing medical advice. Sharing experiences is not
the same as giving medical advice. A simple rule-of-thumb to decide which is which is to determine whether your comment falls
into a “you should” (directive) versus an “I did” (sharing experience) statement. Most comments of the “you should” variety
fall into the category of dispensing advice and will be deleted from the forum.
- Sensitive personal health information may be shared on this board. Please respect your own privacy and the privacy of others
by being aware of what you are sharing. This is a public forum. Membership is required, but that will not stop determined
‘lurkers’ from accessing the site. Specific identifying information (e.g. name & age plus location or school attended, etc)
about children or vulnerable adults should not be posted.
- Personal signatures are welcome. Please refer to #3 when deciding what to include in your personal signature and protect
yourself and your family.
- No profanity or foul language.
- Posts that suggest racial, ethnic, religious, political or gender-based bias (pro or con) will be deleted. Simply put,
this is not the place for them. Posts related specifically to the demographics of PCD, e.g. incidence or prevalence in a
specific ethnic group, are allowed.
- Reasonable people can legitimately disagree on aspects of diagnosis and management of PCD. It is the goal of the
PCDF to provide verifiable information that represents the consensus opinion of experts on PCD. Does that mean this
information is absolutely correct? Not necessarily, but for the purposes of this venue, PCDF position statements will
take precedence in matters of dispute. Moderators have been instructed to apply these statements when disputes arise.
- Posts meant to offend or hurt another member will be deleted.
- Spamming is not permitted. Spamming includes posting messages that have been copied and pasted to multiple forums
or posting forwarded emails.
- Events not sponsored by the PCDF cannot be posted to this forum without prior authorization. This is not to discourage
independent events, but to protect the PCDF from potential liability. Since we can not guarantee that outside events are
safe and program content is accurate, we can not passively endorse outside events through advertising on our site.
- Blatant advertising is not allowed. However, posters should feel free to share information about a product or service
they have found helpful as long as they are not benefiting financially from posting this information. The PCDF does not
endorse any product, service or therapy referenced in individual posts and reserves the right to remove references to
products, services or therapies of questionable repute, unproven benefit or possible danger to the community.
- Any impersonation of a user within these forums or use of a “sock puppet” identity to post anonymously is strictly prohibited
and will result in banning.
- Personal disagreements with PCDF staff, forum moderators or other posters need to be taken off-forum. Posts related to
personal disagreements will be deleted.
- Moderators will attempt to keep threads moving in a positive and constructive manner. If threads appear to be getting
‘stuck’ on a single obsessive topic or have degenerated to a point where they are no longer productive, they will be removed.
- The PCDF reserves the right to modify these guidelines at any time.